SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY
by
ROBIN LENNON DEARING
(Under the Direction of Bonnie L. Yegidis)
ABSTRACT
Being diagnosed with HIV and living with a stigmatized chronic illness can be very
isolating. Women living with HIV often feel alone and want contact with other women who
share their situation (Hackl, Somlai, Kelly, & Kalichman, 1997; Heath & Rodway, 1999;
Moneyham et al., 1998; Walker, 2002). One significant avenue for HIV+ women to receive the
support, information, and affiliation they need is through gender-specific HIV support groups. A
support group specifically for women and their needs has been recommended by researchers and is often preferred by women themselves (Carels, Baucom, Leone, & Rigney, 1998; Emlet,
Tangenberg, & Siverson, 2002; Land, 2000; Meredith, Delaney, Horgan, Fisher, & Fraser, 1997;
Metcalfe, Langstaff, Evans, Paterson, & Reid, 1998; Morrow, Costello, & Boland, 2001; Walker,
2002), but research is lacking about how support groups for HIV+ women can be helpful. This exploratory study addresses the following questions: (a) what are the reasons HIV+ women attend all-female support groups? (b) What happens inside an all-female support group that
HIV+ women find therapeutic? (c) What benefits do HIV+ women gain from attending support groups? And (d) How satisfied are they with their support group experience? Seventy-one women attending nine all-female HIV support groups in Alabama, Georgia, and South Carolina completed a 66-item self-report questionnaire designed by this author to specifically address these research questions.
Results indicate that the primary reason for attendance was to meet other HIV+ women.
Therapeutic factors that women ranked as important were hope, altruism, and universality.
Benefits from attendance included an increase in medication compliance, a decrease in risk re- exposure behaviors, a decrease in feelings of shame, and a network of friends to socialize with.
Overall, the women were strongly satisfied with their group experience.
INDEX WORDS: Support groups, Therapeutic factors, HIV, Women, Social support, Relational Theory, Social Work
SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY
by
ROBIN LENNON DEARING
B.S.W., University of South Florida, 1996
M.S.W., University of South Florida, 1998
A Dissertation Submitted to the Graduate Faculty of The University of Georgia in Partial
Fulfillment of the Requirements for the Degree
DOCTOR OF PHILOSOPHY
ATHENS, GEORGIA
2004
© 2004
Robin Lennon Dearing
All Rights Reserved
SUPPORT GROUPS FOR HIV+ WOMEN: AN EXPLORATORY STUDY
by
ROBIN LENNON DEARING
Major Professor: Bonnie L. Yegidis
Committee: Nancy Kropf Margaret Robinson
Electronic Version Approved:
Maureen Grasso Dean of the Graduate School The University of Georgia May 2004 iv
DEDICATION
This dissertation is dedicated to my family:
Marge McDuffie, David Lennon, Scott Lennon, Dan Lennon, Teri Lennon, Corey Lennon, Maria
Porceddu, Alex Lennon, and Taya Lennon v
ACKNOWLEDGEMENTS
First and foremost I want to thank my husband, Jim Dearing, for his unwavering support
of me in pursuing my Ph.D. I appreciate him, and his wonderful talent to be hysterically funny
and keep me laughing. My life is happier than its ever been because of him.
My thanks and acknowledgment for the helpful guidance, support, and assistance I received from Dr. Bonnie Yegidis, my major professor, who read and commented on this dissertation all the way from start to finish.
I also acknowledge the helpful guidance and support of the other members of my dissertation committee, Dr. Margaret Robinson and Dr. Nancy Kropf. In addition, I appreciate and thank Dr. Tricia Reeves for her advice and support as a role model, mentor, and friend.
I would like to acknowledge all of the women, past and present, who are or have been members of the Tuesday night women’s support group at AIDS Survival Project. They are the inspiration for this dissertation.
Sincere thanks are due to the women who participated in this research and the facilitators of those support groups. Without the backing of the support group facilitators this research would not have been possible. Thank you.
vi
TABLE OF CONTENTS
Page
ACKNOWLEDGEMENTS...... v
CHAPTER
1 INTRODUCTION...... 1
Reasons for Attending Support Groups ...... 2
Theoretical Framework...... 5
Types of Groups...... 12
Group Composition...... 15
Importance to Social Work ...... 17
Problem Statement...... 18
Purpose of the Study ...... 18
2 LITERATURE REVIEW ...... 20
Irving Yalom’s Research ...... 20
Overview of Therapeutic Factors...... 24
Research on Therapeutic Factors in Therapy Groups...... 39
Research on Therapeutic Factors in Self-Help Groups...... 42
Research on Therapeutic Factors in Support Groups ...... 44
Research on HIV Support Groups for Women...... 50
3 METHODOLOGY ...... 56
Research Design...... 56 vii
Procedures...... 63
Data Analysis...... 64
4 RESULTS ...... 66
5 DISCUSSION...... 79
Reasons for Attending Group ...... 87
Therapeutic Factors...... 88
Group Outcomes ...... 90
Satisfaction with Groups...... 93
Demographics ...... 97
Limitations of the Study...... 99
Recommendations for Social Work Practice ...... 100
Recommendations for Future Research...... 103
Conclusion ...... 103
REFERENCES ...... 105
APPENDICES
A QUESTIONNAIRE FOR HIV+ WOMEN ATTENDING
SUPPORT GROUPS ...... 123
B QUALITATIVE RESPONSES ...... 130
1
CHAPTER 1
INTRODUCTION
“It warms my heart to be a member of my support group. It is a safe place where I can say anything I want and not feel like an outsider,” said a member of a support group for HIV+ women. Women who are diagnosed with human immunodeficiency virus (HIV) deal with myriad feelings, and some of these women turn to each other for support in living with HIV. A gathering of HIV+ women in a support group can have a profound impact on each member’s life and personal journey (Chung & Magraw, 1992; Ribble, 1989). There is something transformational and empowering in support groups and in these HIV support groups for women in particular. Yalom (1995) described these dynamics as therapeutic factors.
Women living with HIV often feel alone and want contact with other women who share their situation (Hackl, Somlai, Kelly, & Kalichman, 1997; Heath & Rodway, 1999; Moneyham et al., 1998; Walker, 2002). Because of this strong desire for contact with other HIV+ women, support groups may be an ideal arrangement for them. A support group designed specifically for women and their needs has been recommended by researchers and is often preferred by the women themselves (Carels, Baucom, Leone, & Rigney, 1998; Emlet, Tangenberg, & Siverson,
2002; Land, 2000; Meredith, Delaney, Horgan, Fisher, & Fraser, 1997; Metcalfe, Langstaff,
Evans, Paterson, & Reid, 1998; Morrow, Costello, & Boland, 2001; Walker, 2002).
The experience of being diagnosed with HIV can threaten a woman’s lifestyle, identity, and relationships with others (Ciambrone, 2001). Women may have to deal with a complicated medication regime, drug side effects, and numerous medical appointments. The HIV virus, being 2 sexually transmittable, has an ever-present stigma and shame that affects one’s self-identity and sexual life. As a communicable and stigmatized disease, HIV can negatively impact one’s current or potential relationships. Women living with HIV fear not only the breakup of relationships but also family, peer, and societal rejection (Gielen et al., 2000; Hackl et al., 1997;
Peterson, 2003).
The incidence of HIV disease in women is alarming. According to the Center for Disease
Control [CDC] (2003), in the United States, 30% of new HIV infections occur in women.
Seventy-five percent of these new HIV infections are contracted through heterosexual contact and 25% through IV drug use. In 2000, 80% of cases reported were in African-American and
Hispanic women, and in 1999, AIDS was the 5th leading cause of death for U.S. women aged
25-44. Among African-American women in this same age group, HIV/AIDS was the third leading cause of death (CDC, 2003). HIV/AIDS has become a public health issue that affects a woman’s personal health and well-being, and the demographics show that minority women are disproportionately affected. Women with HIV may have a more difficult time accessing health care and face a multitude of other problems (e.g., poverty, substance abuse, domestic violence, etc.). These statistics emphasize the significant impact that HIV/AIDS has had on women’s physical and emotional health.
Reasons for Attending Support Groups
There are four reasons that may influence an HIV+ woman’s desire to attend an all- female HIV support group: having a sense of isolation, the desire to belong, feeling different, and wanting HIV-related information. Studies have found that almost all women who find that they are HIV+ report that they experience a profound sense of isolation because of their disease
(Ciambrone, 2002). Most have never met or heard of another woman with HIV; the stigma 3 attached to the disease is often what keeps women silent (Chung & Magraw, 1992). This limited exposure to other women living with HIV leads to feelings of isolation and disconnection. In her article “Social Work Practice with Groups in Health Care,” Helen Northen (1989) gave this rationale for support groups: “All people need to develop and sustain satisfying connections with other people; human relatedness is the key to healthy development and functioning” (p. 9). In addition to feelings of shame, fear, and isolation, HIV+ women face a complicated tangle of inter-related problems: limited access to health care, medication side effects, financial difficulties, and the feeling that they are damaged goods, unworthy of an intimate love relationship, and unable to be caregivers. The need to go to an HIV support group for women commonly follows isolation felt by HIV+ women (Bunting, Bevier, & Baker, 1999; Metcalfe et al., 1998).
The universal human need to belong has been widely recognized (Baumeister & Leary,
1995; Lakin, 1985). All humans want to be part of a group, to be loved and appreciated by others, to be part of something bigger than ourselves. Connection is human sustenance, and when the need to belong is not satisfied, when one feels rejected, misunderstood, or discriminated against, there can be suffering, depression, even death. This desire to belong, a basic human need, is a reason why an individual might want to join a support group of others facing the same diagnosis. A support group can provide a sense of community where members have a feeling of belonging, a feeling that members matter to one another, and a shared faith that members’ needs will be met through their commitment to be together.
Support groups provide the opportunity for normalizing one’s experience through knowing others with the same diagnosis, which can reduce members’ feelings of difference and restore feelings of normalcy (Ciambrone, 2001). Droge, Arntson, and Norton (1986) asserted that 4
people join groups for social reasons and that the more stigmatizing the condition, the more
likely they are to join a group of similar others. Feelings of disconnection and alienation are
some reasons people have desired to affiliate themselves with others. It has been noted that
support groups decrease isolation, provide a normalizing effect, and open a network for
socialization (Adamsen, 2002; Adamsen & Rasmussen, 2001). Studies have found that the
opportunity to meet others sharing a similar problem is one of the most beneficial aspects of
group participation (Citron, Solomon, & Draine, 1999). In a study of people who attend illness
support groups, Davison, Pennebaker, and Dickerson (2000) found that the greater the threat of death and costly medical treatment, the more likely one is to participate in a face-to-face support group. Conditions described as embarrassing, socially stigmatizing, and disfiguring had a strong correlation with support-seeking behavior (Davison et al., 2000).
Obtaining information about their diagnosis may be a very important reason HIV+ women choose to attend. Support groups for people with chronic illnesses sponsored by national organizations, such as the American Cancer Society and the American Heart Association, or local community agencies and hospitals have become very common. Group facilitators and other members are important sources of informational support. There is evidence that support groups facilitate the adjustment process of people with chronic illnesses because they offer benefits such as emotional support, information, and a sense of affiliation (Stewart, Davidson, Meade, Hirth, &
Weld-Viscount, 2001). Participation in an HIV support group was perceived to be most effective in providing health information (Grady, 2001). These qualities may be important reasons for women living with HIV to attend support groups. Experimental outcome studies have shown that support groups improve the quality of life for cancer patients and their ability to cope with the consequences of the disease (Spiegel, Bloom, & Yalom, 1981). Support groups specific to HIV+ 5
women may help relieve feelings of isolation, disconnection, and abnormality and provide HIV-
related information for those who greatly need it (Metcalfe et al., 1998).
Theoretical Framework
The author evaluated several theories to find a good fit with the subject of the current
study. Social support theory, Maslow’s hierarchy of needs, and relational theory were all
explored. While all three have relevance for support groups, relational theory is most applicable
due to its ability to explain both social support needs and belongingness needs within the
relational connection.
Social Support Theory and Maslow’s Hierarchy of Needs
Social support theory posits that social support has a buffering effect on stress (Cohen &
Syme, 1985). Social support can be described as help, acceptance, and encouragement that is
provided by family, friends, or formal institutions. Many studies have reported the beneficial
effect of social support on mental and physical health in adults (Berkman, 1984, 1995). Social support theory has also been used in studies of the health-related quality of life for HIV+ women
(Ciambrone, 2002). Findings have concluded that HIV+ women who have larger social support networks report better mental health and overall quality of life. Social support is correlated with better psychological and physical functioning, and perceived family support has been predictive of reduction in loneliness, stress, and depressive symptoms (Gielen, McDonnell, Wu, O'Campo,
& Faden, 2001; Hudson, Lee, Miramontes, & Portillo, 2001; Serovich, Kimberly, Mosack, &
Lewis, 2001; Simoni & Cooperman, 2000).
Groups may function as temporary or permanent support networks. The protective environment of a group can offer a safe place to help members not only cope with minor and major life crises more effectively but also build and maintain social relationships and generate a 6 sense of camaraderie. Attending a group with a nurturing environment often brings comfort and understanding beyond many people’s expectations (Wasserman & Danforth, 1988). The support provided to members can be emotional, informational, or both. Members of groups typically help one another with advice based on lived experience or practical needs such as sharing a ride to the group meeting. As a result, social support occurs within the context of relationship, although social support theory does not address this factor.
Another theoretical basis for explaining reasons for joining an HIV support group is
Maslow’s hierarchy of needs (Maslow, 1970). Maslow’s theory of human motivation derives from the idea that humans are driven by certain needs and that these needs are hierarchical. All human beings are compelled to meet these needs throughout the lifespan. In Maslow’s hierarchy, the first need is the need for survival (i.e., food, water, and shelter). The second level is the need for safety (i.e., physical and psychological security); the third is the need for belonging (i.e., love and acceptance); the fourth is a need is for approval, recognition, and self-esteem. The final need is self-actualization. Maslow believed humans have an innate tendency toward growth and that lower needs in the hierarchy have to be satisfied before higher needs.
Membership with peers facing similar situations in a group facilitated by a caring leader may be a safe space for individuals to have their safety needs met. Groups provide a sense of belonging and the opportunity to make multiple connections. The shared need to feel safe and experience a sense of belonging underscores why people join support groups and what needs their membership might fulfill. Indeed, people do possess a fundamental need to belong, and most humans will actively pursue relationships and social bonding in order to meet this need
(Baumeister & Leary, 1995). The hierarchy of needs that Maslow’s theory presents, however, can also be satisfied within a relational context. Relational theory emphasizes how mutual and 7
empathetic relationships can fulfill social support needs and safety and belongingness needs,
either in an individual relationship or in a support group format.
Overview of Relational Theory
Relational theory is an appropriate fit with the population of HIV+ women and the utilization of support groups, the subject of this dissertation because it illuminates a woman’s
predisposition for connection with others (Jordan, 1997; Miller, 1986). A central unifying factor
in women’s development theories is the role of relationships (Miller & Stiver, 1997). Jean Baker
Miller (1976) commented, a “women’s sense of self becomes very much organized around being
able to make and then maintain affiliation and relationships” (p. 83). Relational theory proposes
that the primary motivation for women throughout life is not separation but the establishment of
a strong sense of connection (Jordan, Kaplan, Miller, Stiver, & Surrey, 1991) and that women’s self-concept is based on mutual participation in a relationship. Empathetic mutual relationships are crucial to relational theory and will be elaborated on in the following paragraphs.
Relationship is an ongoing connection and bond between two or more individuals, “a process of mutual relational interaction” (Surrey, 1991b, p. 62). A relationship can be defined as a formal or informal contract in which each person has his or her own responsibilities and rewards. Relationships provide a space where an individual’s needs for love, affection, respect, care, and compassion can be met. There are different types of relationships with different levels of importance, in some of which one may be more personally invested (e.g., parent-child).
Ideally, relationships should be mutual so that all individuals involved give and receive and thus are rewarded.
Mutuality is the reciprocal quality that makes each person a giver and a receiver. It is a two-way flow of some dynamic (e.g., feelings, thoughts, concrete help, love), an ongoing 8
interdependence. The key is that this dynamic flows back and forth. Just as infants are in
continuous interaction with their mothers or caregivers by giving cues to have their needs met,
adults develop mutuality through interactive, reciprocal behaviors with others that establish
relational bonds. Each person typically gives at his or her level of ability. Mutuality is the aspect
of relationship that provides joy and meaning, the knowledge that one’s well-being is as
important to the other person as her own (Jordan, 1991).
Empathy is the ability to identify with another person’s feelings. The ability to be
empathetic is central to successful social relationships in all stages of life because it moves one
from isolation to connection. To empathize is to experience mutual responsiveness, to be open to
being moved, and to be aware of our impact on others. When this mutual empathy flows,
something new is created: a connection based in authenticity (Miller & Stiver, 1997). Miller
(1986) explained that participants in mutual, empathic, and empowering relationships may gain five psychological outcomes: (a) increased zest and vitality, (b) empowerment to act, (c) knowledge of self and others, (d) self-worth, and (e) a desire for more connection. As has been noted, relational theory fits well with women’s growth and well-being. In this section, the reasons why relational theory is a good fit with HIV+ women in particular will be presented.
The experience of disconnection is the source of human suffering (Jordan, 1995), and the feeling of shame of being infected with HIV could be considered what relational theory calls a disconnection; a need to withdraw while desperately wishing for connection. To understand
HIV+ women in regard to relational theory, we must understand the diagnosis of HIV as a major disconnection that leads to a relational image of being defective and blameworthy. All women grow up (in the context of family, culture, and society) watching others and having relational experiences that form their beliefs about what they expect will happen in future relationships. 9
Before an HIV diagnosis, each woman has encountered unique experiences in life, with varying levels of relationship connection and disconnection.
A woman who has observed people living with HIV being treated poorly, disparaged, judged, and rejected may have internalized a relational image of what will happen if she has HIV disease. If she does get HIV, her experience of shame may cause her to separate a part of herself in order to keep her HIV status a secret. The central relational paradox is that despite longing for connection, she might use strategies of disconnection (i.e., silence) to stay out of connection.
Such disconnection leads to psychological isolation.
Some HIV+ women fear infecting others and therefore become celibate. Others believe they are defective and that no one would want a romantic relationship with them. It is not merely the feeling of being physically alone but “feeling that one is locked out of the possibility of human connection and of being powerless to change the situation” that “can lead to a sense of hopelessness and desperation” (Miller & Stiver, 1997, p. 72). Long-term or traumatic disconnection may lead to psychological problems such as depression, anxiety, and addictions.
Almost invariably, an HIV diagnosis causes a disconnection. Since currently there is no cure for
HIV, how can a woman avoid the problems that follow such a disconnection?
When a woman is disconnected from others, she may experience disempowerment, confusion, and diminished zest, vitality, and self-worth. Women living with HIV face similar challenges, such as coping with an incurable and stigmatized illness (Walker, 2002). HIV+ women who perceive they are disconnected from their family and existing friends may turn to a support group. Developing mutual empathetic relationships is crucial, and for many HIV+ women, a necessary component of a good support system is the presence of other HIV+ women
(Harmon, 1999). 10
A new relational experience is vital to the healing process (Miller & Stiver, 1997).
Instead of hiding their diagnosis and feelings associated with it, HIV+ women need a safe space
where they can be their true selves, be accepted, be validated, and have mutually empathetic
interchanges. Fedele and Harrington (1990) asserted that healing occurs in nonjudgmental
relationships where a woman can experience another person’s empathy for her. This type of relationship can develop in support groups with other HIV+ women. Mutually empowering connections with others can create new relational images and new expectations for future relationships.
Support groups composed of other HIV+ women can provide the opportunity for mutually empathic relationships with women who have the same diagnosis. Who can better understand and acknowledge the difficulties of living with HIV than someone who knows the experience personally? Peers possess an ability to empathize because of their experiential knowledge of living with HIV, knowledge that other persons cannot have (Sandstrom, 1996).
Therapeutic factors present in support groups facilitate the potential for establishing mutual empathy and empowerment. Universality and cohesiveness are likely enhanced because all share the experience of being HIV+ and female; sharing one’s feelings of disconnection and genuine experiences can be emotionally touching to the group members; and seeing an empathetic response from fellow group members’ can result in mutual empowerment. Furthermore, to give and receive empathetic responses creates the feeling of being energized and a desire for more connection. The connections made in a support group can develop into mutually growth- fostering relationships. Mutual involvement means that all individuals are free to express themselves authentically, empathize with each other, and feel empowered by the relationship. 11
Women may attend support groups when their support systems fail to meet their
psychological needs. An HIV+ woman may have needs that are not being met by family or
existing institutions. Women want to be cared about, to be listened to, and to be understood
(Stiver, 1991). This understanding or empathy plays a central role in “caring about” one another
in an HIV support group for women. These support groups provide an environment where
members can talk openly, feel accepted, and feel secure enough to develop attachments to others.
Many mutual relationships can be established in a support group environment (Miller & Stiver,
1997).
Relationships are a source of power and effectiveness: “Because this kind of power transfers effectively to movement and action across many relationships, individual activity
experienced in a context of shared activity can feel very powerful and sustainable” (Surrey,
1991a, p. 170). The relationships established within support groups can empower women by
increasing self-esteem and self-worth, which may result in the woman taking better care of
herself and her health (DeMarco, Miller, Patsdaughter, Chisholm, & Grindel, 1998).
Women’s original reasons for attending a support group may change during the course of
being a group member. Yalom (1995) found that people seeking group therapy often had symptom relief as their initial reason for attending; after a few months in therapy, their goals
became more interpersonal: to relate better to others, to engage in intimate relationships, and to
be honest with others. Initially seeking to identify and bond with other women living with HIV,
women may stay members of the group because of other empowering benefits they receive.
Support groups may fulfill social support needs, safety and belongingness needs,
attachment needs, and relational needs that individual relationships do not. The group format
offers the opportunity for a network of interactions that may fill the needs for empathetic 12
connection of different group members attending for different reasons. Relational theory has
been presented as the best theory to explain support groups for HIV+ women.
Types of Groups
There are a wide range of group approaches to help people with social, physical, and
psychological problems. The three most common group modalities are self-help groups, support
groups, and psychotherapy groups. Schopler and Galinsky (1993) described helping groups as a
continuum with self-help groups at one end, psychotherapy groups at the other end, and support
groups in the middle. Given the similarities and differences among the three types of groups,
each of these three types of groups is described in more detail below.
Psychotherapy Groups
According to Kurtz (1997), group therapy is defined as professional treatment in a group
setting that seeks “to produce individual growth and change through the relationships established
among members with the help of a professional therapist” (p. 7). Group therapists, depending on
theoretical orientation, assist in an individual’s growth and change by interpreting interactions
and patterns of behavior in members to help them gain insight into their own thoughts and
behavior. The members, often called patients, have a difficult time with interpersonal relationships and can benefit from the social interactions that are a basic part of the group
therapy experience. In group therapy, importance is often placed on identification of the patients’
problem, behavioral modification, and/or personality change (Gabriel, 1996). Psychotherapy
groups are led by licensed mental health professionals, and group members are generally charged
per session for group therapy. Typically, the group therapist decides who will be a member of the group. Members of these groups usually go through a prescreening interview and, if deemed
appropriate, are invited to attend the group. Some insurance companies cover group services as 13
part of their behavioral health program, which often means a member has a diagnosis from the
Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), a widely used psychiatric
manual. Membership may consist of people with a similar diagnosis (e.g., depression) or comprised of people with a variety of different problems and emotional issues. Psychotherapy groups may be time limited (short-term) or indefinite (long-term).
Self-Help Groups
Self-help groups are small gatherings of people with a common problem or life situation
(e.g., alcoholism, drug addiction, eating disorders). They meet to provide support and education, usually in a specific method that promotes a desired change (e.g., twelve steps). This method is often an explicit set of beliefs that the member adopts and practices and that is supposed to stop the unwelcome behavior that brought them to the group (Kurtz, 1997). The underlying principle of self-help groups is that individuals who have experience with the situation or problem are the experts (Riessman, 1997; Riessman & Banks, 2001; Rosenberg, 1984). Thus, the self-help model values member experience over professional expertise (Kurtz, 1997). Self-help groups are peer- led and self-governing. Alcoholics Anonymous (AA) is the earliest and most widely recognized self-help group. It was begun in 1935 by a physician and stockbroker, both alcoholics. The basic philosophy is that an alcoholic can help another alcoholic as no nonalcoholic can and that recovery begins with sharing experience, strength, and hope (W, 1986). AA has become the prototype self-help group (Fichtner, Jobe, & Barter, 1991).
Support Groups
Support groups share some characteristics with self-help groups and some with psychotherapy groups. They combine the expertise of a professional leader with the experiential knowledge of members, both of which are considered to be extremely valuable. Support groups 14
are defined as meeting “for the purpose of giving emotional support and information to persons
with a common problem” (Kurtz, 1997, p. 4). Support groups are member-centered and
supportive in nature; their underlying principle is empowerment (Gabriel, 1996). They create a
non-stigmatizing, less intimidating way of getting help for a specific predicament (Wasserman &
Danforth, 1988), the basis of which is shared experience. People who join support groups are
often dealing with a stigmatizing situation or a troublesome health condition (Barouh, 1992;
Gambe & Getzel, 1989; Taylor, Falke, Shoptaw, & Lichtman, 1986) and have begun to feel
isolated or alone. Helgeson and Gottlieb (2000) have noted that the reason support groups are
helpful “is that peers - people facing a similar stressor - are able to understand one another’s
situation in a way that naturally occurring network members may not” (p. 224).
Similarities and Differences Among Groups
Support groups and self-help groups have several similar qualities: (a) they are made up
of members with a common problem, stressor, or life experience; (b) both share an emphasis on
developing a support network using a mutual aid approach to support (both during group
meetings and outside of meetings); and (c) they are provided at no cost to members. Members of
support and self-help groups are in control of deciding which group they attend. The primary
differences between support groups and self-help groups are (a) the type of leadership in the
group and (b) the goals of attendance. A support-group leader does not have to share the group’s
issue, where as a self-help group is led by a peer. The goals of a support group are supportive and educative in nature, whereas the goals of a self-help group often focus on social or behavioral change. Members of support groups do not usually see themselves as psychologically ill or having deviant behaviors in need of change. Instead, they are often individuals who are in 15
circumstances beyond their control and want to learn how to empower themselves (Magen &
Glajchen, 1999).
Support groups share with psychotherapy groups the characteristic of having a
professional leader, although the leader’s role differs. In a support group, leadership is characterized by a facilitative approach, through which the facilitator seeks opportunities to help members share their experiences, connect with each other, and empathically respond to each other; the emphasis is on safety, mutual aid, and empowerment (Gabriel, 1996; Steinberg, 1997).
In a psychotherapy group, the leader is focused on helping clients increase awareness of their characteristic defenses and unconscious motives (Kottler, 2001). In a group lead by a mental health professional, the leader’s role is important in setting the stage for which group dynamics will be developed, whether they be supportive dynamics in support groups or intrapersonal insight in psychotherapy groups.
Therapy, self-help, and support groups, though having differences in member composition, goals, leadership, and methods of helping, provide a range of approaches to helping people with social, physical, and psychological problems. Support groups for HIV+ women have been utilized as a resource (a) because an HIV diagnosis does not necessarily mean there is a mental illness to be treated or a problem behavior to be changed, (b) because of the need for peer interaction, and (c) because their implementation is cost effective. In the following section, a specific aspect of HIV support groups is addressed: gender-specific group composition.
Group Composition
Factors for determining composition of groups for HIV+ women may include issues of gender, ethnicity, sexual orientation, length of diagnosis, and age of group members. Careful consideration of group composition is important because it increases the potential for therapeutic 16 factors to take place and be effective. Yalom (1995) saw group composition as a means for producing effective therapy outcomes, for it can enhance cohesiveness and maximize interpersonal interaction. Regarding support group orientation, Yalom noted that homogeneous groups “jell more quickly, become more cohesive, offer more immediate support to group members, are better attended, have less conflict, and provide a more rapid relief of symptoms”
(p. 255). Yalom concluded that cohesiveness should “be the primary guideline in the composition of therapy groups” (p. 264).
Siebert and Dorfman (1995) asserted that composition of support groups for people with
HIV should ideally combine homogeneous members (based on gender, stage of illness, risk group for contracting HIV, etc.) to facilitate the therapeutic factors of instillation of hope, universality, and group cohesion. The value of homogeneity has been confirmed by HIV+ women, who have reported that they feel uncomfortable as the only woman in a mixed gender group (Walker, 2002). Others have also implied the value of homogeneity of composition
(Goicoechea-Balbona, Barnaby, Ellis, & Foxworth, 2000; Kelly, 1998; Kornhaber & Malone,
1996). Because it influences group cohesion, attendance, and positive outcomes, group composition is an important consideration for researchers, social workers, and program planners.
For some women, gender likeness is a very important part of support and treatment. An all-female group provides a potentially safe place for women to talk about issues and concerns specific to women in an atmosphere that does not replicate the lower status position of women in larger society (Hardesty & Greif, 1994). The value of all-female treatment formats has been recognized in the treatment of addictions (Covington, 2002; Zelvin, 1999). All-female groups contain other women who may be potential sources of support and nurturance in addition to being role models who are living constructively. Groups such as Women for Sobriety have found 17
gender differences to be very important to the group process. Women may be inhibited in the
presence of men and may follow gender role expectations that relegate them to less powerful
positions within the group (Garvin & Reed, 1983). Furthermore, group therapy research suggests
that women do better in all-female groups (Amaro, 1995; Aries, 1976; Holmes, 2002; Horne,
1999; Siebert & Dorfman, 1995). In summary, group composition may play a significant part in the accomplishment of group members’ goals, and homogeneous gender groups can be beneficial to the women who attend them.
Importance to Social Work
Social work is a profession dedicated to maximizing the dignity and worth of individuals, especially people who are vulnerable and oppressed. HIV+ women are one such population.
Women living with HIV are not just facing a chronic life-limiting illness, but also stigma, isolation, and the fear of losing relationships. In addition, a diagnosis of HIV may exacerbate already existing psychosocial problems: issues of powerlessness, gender inequity, and poverty
(Peterson, 1995). Social workers have the skills to advocate for the needs of clients and provide supportive services to those in need.
Social workers value relationships and connection. They “seek to strengthen relationships
among people in a purposeful effort to promote, restore, maintain, and enhance the well being of individuals, families, social groups, organizations, and communities” (NASW, 1999, p. 6). One way social workers can strengthen relationships among people is by organizing and facilitating support groups for HIV+ women. As has been noted, connection is important to all women and support groups are a method of allowing clients to help each other using the strengths and resources of every member of the group. 18
Social workers promote a strengths perspective where clients are seen as having the
capacity to change and meet their own needs. This study sees HIV+ women as valuable and
capable of identifying their concerns and solutions to those concerns. The dignity and worth of
individuals and importance of human relationships can be realized in member-focused support
groups. As devastating as HIV/AIDS has been, there is hope and optimism. Support groups have
made an enormous difference in the lives of many women with chronic health conditions.
Understanding their impact with HIV+ women is imperative.
Problem Statement
Little is known about the therapeutic processes that make HIV+ women’s support groups effective even though such groups have been in existence for almost two decades and are recommended as a strategy to help HIV+ women cope with psychosocial stress. The unique qualities and characteristics of these groups are not known, nor are the demographics of the
women who attend these groups. There have been no studies to date concerning reasons HIV+ women give for attending women-only support groups, what therapeutic factors HIV+ women
find helpful in these support groups, and whether participation in such a group is valuable. Social
workers interested in developing effective programs or services and policies for HIV+ women
need to be informed about the role of therapeutic factors in single-gender support groups.
Purpose of the Study
This exploratory study examines a new area of inquiry. The purpose of this study is to (a)
identify characteristics of women who attend the support groups, (b) identify the reasons women
attend support groups, (c) measure therapeutic factors present within the groups, (d) determine
behavioral outcomes as a result of support group attendance, and (e) determine the degree of
satisfaction for women who attend these groups. The significance of this study will be its 19
contribution to the knowledge base concerning characteristics of all-female HIV support groups,
reasons for which the women attend, benefits of attendance to HIV+ women, and the group
processes these women experience as helpful and/or therapeutic. This study may also increase
awareness of these groups in the general public, in the field of social work, and in HIV service providers and recipients. 20
CHAPTER 2
LITERATURE REVIEW
The first therapeutic groups are documented to have been used in the early 1900’s with tuberculosis patients. Physician Joseph Pratt provided group meetings to teach patients information and skills for dealing with their diagnoses. Pratt used successful patients to provide oral testimonials at group meetings, and he noted that the patients who took time to share health information and offer encouragement and support to other patients did better overall (Andrews,
1995; Gabriel, 1996). Since Pratt’s group approach in 1906, there has been a plethora of published research describing various group treatment approaches (Fedele, 1994; Poey, 1985;
Scheidlinger, 1994).
The purpose of this chapter is to review the theoretical framework of Yalom, provide an overview of therapeutic factors present in groups, provide research findings on therapeutic factors group members value most in therapy groups, self-help groups, and support groups, present the research on HIV support groups with women, and sum up the therapeutic factors most likely to be helpful in support groups for HIV+ women. Studies under each subheading are presented in chronological order.
Irvin Yalom’s Research
For the present study, the work of Irvin Yalom provides the theoretical foundation for analyzing how HIV+ women’s support groups may help women who attend them. Gazda, Ginter, and Horne (2001) asserted that Yalom is one of the most significant contributors to the group therapy research field in the past twenty years. Already in its fourth edition, The Theory and 21
Practice of Group Psychotherapy (1995) is the flagship book on group therapy. Used to train
therapists to lead groups and help researchers study groups, the therapeutic factors are Yalom’s
way of organizing the mechanisms of change in groups for the purpose of teaching and research.
His text and methods have been widely used and accepted (Burke, Coddington, Bakeman, &
Clance, 1994; Colijn, Hoencamp, Snijders, Van der Spek, & et al., 1991; Freeman, 1991; Nehls,
1991).
Yalom has established a theoretical framework for understanding why and how the group method helps people heal and change, including the discovery of factors that lie at the core of the group’s power as an agent of change. Yalom's curative factors model argues that effective groups possess certain common characteristics. Originally called curative factors, and later named therapeutic factors, Yalom identified processes that occur within groups that account for positive outcomes. Therapeutic factors are the processes that happen as a result of group dynamics that both cause people to change and contribute to their improvement (Bloch & Crouch, 1985). A therapeutic factor is not a specific intervention but the mechanism through which group members change. These processes or mechanisms emerge in the course of the interaction of people in a group. They can be active, such as giving feedback to another member, or passive, such as supportive presence, but the interactions between people cause therapeutic processes to operate.
Member interaction is crucial to what Yalom (1975) has called interpersonal group therapy, a method for change through relationships with others.
Yalom, a psychiatrist, has based much of his theory on what he called a “prototypic type
of group therapy,” the “intensive, heterogeneously composed, outpatient psychotherapy group
with its ambitious goals of both symptomatic relief and characterological change” (Yalom, 1995,
p. xii). Because aspects of groups are inherent to group process (i.e., the potential to fulfill 22
belongingness needs and/or provide a supportive environment), Yalom’s framework for the healing and change is applicable to all types of groups, including support groups. Yalom (1975)
explained,
My first strategy was simplification; I attempted to introduce order by separating “front” from “core” in each of the group therapies. The “front” consists of the form, the techniques, the specialized language, and the aura surrounding each of the schools of therapy. The “core” consists of those aspects of the experience which are intrinsic to the therapeutic process - that is, the bare-boned mechanisms of change. Disregard the “front,” consider only the actual method of effecting change in the patient, and one will find that these methods are limited in number and remarkably similar across groups. (p. xi)
According to Yalom’s simplification strategy, in this study, the support group form would be the
“front” and the therapeutic factors the “core.”
Yalom identified 11 mechanisms of change, the therapeutic factors, which are present in
almost all types of groups: instillation of hope, universality, imparting of information, altruism,
recapitulation of the primary family, development of socializing techniques, imitative behavior,
interpersonal learning, cohesiveness, catharsis, and existential factors. Yalom believes that the
interactions among group members are the basis of group therapy. Without the interaction of
members in the group, there are no therapeutic factors:
One of the most important underlying assumptions in this text is that interpersonal interaction is crucial in group therapy. The truly potent therapy group first provides an arena for patients to interact freely with others, then helps them to identify and understand what goes wrong in their interactions, and ultimately enables them to change those maladaptive patterns. (Yalom, 1995, p. xiv)
Yalom pointed out that the group is the agent of change and that the group therapist helps
facilitate that interactional process. This interactional process, which undergirds interpersonal group therapy, is the context for personal change upon which Yalom based his theory. In a
23 support group format, the interaction between and among members is the conduit for relational connectedness. Table 1 Therapeutic Factors
Instillation of hope – Members are inspired and their expectations raised by observing other members in similar circumstances improve their lives. Universality – The disconfirmation of feelings of uniqueness is a powerful source of relief that may be described as, “we’re all in the same boat.” Imparting of information – Didactic instruction, as well as advice, suggestions, or direct guidance about life problems offered either by the therapist or other members. Altruism – The members’ feelings about and views of themselves due to the help offered other members. Corrective recapitulation of the primary family group – Working out problems with therapists and other members is also working through unfinished business from long ago, thus, early familial conflicts are relived correctively. Development of socializing techniques – Social learning is a curative factor which operates in all therapy groups, although the nature of the skills taught and the explicitness of the process varies greatly depending upon the type of group. Imitative behavior – For a patient to benefit by observing the therapy of another patient with a similar problem constellation. This phenomenon is generally referred to as “vicarious” or “spectator” therapy. Interpersonal learning – The group members, through consensual validation and self-observation, become aware of significant aspects of their interpersonal behavior. The group therapy analogue of such individual therapy curative factors as insight, working through the transference, the corrective emotional experience, as well as processes unique to the group setting. Group cohesiveness – The condition of members feeling warmth and comfort in the group, feeling they belong, valuing the group and feeling, in turn, that they are valued and unconditionally accepted and supported by the other members. Catharsis – Members are able to say what is bothering them instead of holding it in. This factor includes a feeling of relief and cognitive understanding. Existential factors – Several issues are represented in this cluster: responsibility, basic isolation, contingency, the recognition of our mortality and the ensuing consequences for the conduct of one’s life, and the capriciousness of existence. (Adapted from Yalom, 1975)
24
Research on therapeutic factors has noted that different group settings, group populations, group compositions, and group purposes determine which factors group members value and perceive as helpful (Fuhriman, Drescher, Hanson, Henrie, & Rybicki, 1986). According to
Yalom (1995), “Some therapeutic factors are important at one stage of a group, whereas others predominate at another. Even within the same group, different patients benefit from different therapeutic factors” (p. 69). Although therapeutic factors are present in all types of groups, their
importance and emphasis vary depending on the group. Yalom’s therapeutic factors have
become so important because of their applicability across group modalities and among different
populations of group members. Furthermore the therapeutic factors framework has been used to study and understand group processes in all types of group settings and, as a result, research
using this framework can be compared. The next section will concentrate on understanding the
therapeutic factors individually.
Overview of Therapeutic Factors
Yalom has indicated that the therapeutic factors (see Table 1) are not independent
dimensions but a complex network of many factors. In this section, for the purpose of
understanding these therapeutic factors, definitions are provided for each one. In addition, the
place of each factor in understanding human development and how and why each therapeutic
factor may be important for HIV+ women’s support groups is described.
Instillation of Hope
Hope is generally defined as positive expectations for the future: “A desire of some good,
accompanied with an expectation of obtaining it, or a belief that it is obtainable; confidence;
pleasing expectancy” (Abate, 1997). Hope has long been used to encourage members to join
therapy, support, and self-help groups and to believe in their ability to help. Both in the past and 25
currently, the use of testimonials at group meetings has been employed as a way to instill hope.
Testimonials from successfully cured tuberculosis patients were used by physician Joseph Pratt in the early 1900’s to promote the hope in other TB patients that they too could be cured (1907).
In addition, self-help groups such as Alcoholics Anonymous (AA) use testimonials from
successful members in group meetings to infuse a sense of hope. The instillation of hope
constantly takes place at a practical level at AA meetings: “One of the great strengths of
Alcoholics Anonymous is the fact that the leaders are all living inspirations to others” (Yalom,
1995). Group members derive motivation that they can become healthier by seeing the recovery
of other group members (Wender, 1936).
In his 1962 book, Therapist-Patient Expectancies in Psychotherapy, Goldstein concluded
that expectations (i.e., hope) are major determinants of behavior. His research noted that patients
with moderate expectation of help in therapy experienced the greatest therapeutic change.
Expectations of the therapists that their patients will be successful in therapy significantly influences patients’ behavior and thus treatment outcome (Goldstein, 1962). In a study of self-
help group attenders, hope was associated with more frequent health-promoting behaviors, including the important component of medication adherence (Magura et al., 2003).
Hope has more recently been identified as an effective ingredient of successful psychotherapy. In the book The Heart and Soul of Change: What Works in Therapy, Hubble,
Duncan, & Miller (1999) identify four factors responsible for therapeutic change in clients; (a)
extra-therapeutic (individual personality factors); (b) relationship; (c) placebo, hope, and/or
expectancy; and (d) structure, model, and/or technique. Even the expectation of change (and the
hope that accompanies it) is a significant factor in successful improvement in therapy. 26
Ciambrone (2001) found that the most typical reaction to being diagnosed with HIV for women was hopelessness. Women coming to a support group may be looking for hope to replace despair: to see if and how other HIV+ women are living life to the fullest. They need to hear and see that other women have coped with similar experiences and lived through them to feel hopeful. Having hope can be a powerful internal motivation that may be used to encourage women to take care of themselves, stand up for themselves, and not see themselves as victims.
Universality
Universality is discovering that others have had similar experiences. The Social Work
Dictionary defines universality as “the exposure of people to others in the group who have similar problems, followed by the growing realization that the problems are not unique nor incomprehensible to others and that they need not be faced alone” (Barker, 1995, p. 395).
Support groups are organized around an experience of similarity, and one of the most important roles of a support group is to let people know they are not alone. The curative factor of universality provides a sense of fellowship and connectedness with others.
Of universality, Yalom (1975) shared his personal experience with patients: “After hearing other members disclose concerns similar to their own, patients report feeling more in touch with the world and describe the process as a ‘welcome to the human race’ experience” (pp.
7-8). Universality unites people as they share similar thoughts, feelings, fears, and/or reactions.
When they realize that they are normal, they feel validated (Yalom, 1995).
People who have been through, or are going through, a similar circumstance can do more than sympathize; they can relate to what others are going through and keep them from feeling they are alone. Wender (1936) noted that the group experience allows patients to learn that they are not unique in their problems, that many co-members have similar underlying difficulties, and 27
the knowledge of such lessens their “personal tensions” and changes their outlook on their
situation.
Lieberman (1975) noted that universality exerts a supportive effect and appears to offer
relief from a negative image of self. The effects of universality are closely related to
destigmatization. Robinson (1980) pointed out that a sense of stigma may diminish through a
change in a person’s self-perception that follows participation in a group composed of similar
others. A strong identification with the other group members is possible with more homogenous group membership. Jeske (1973) found a positive correlation between the frequency of identification with other group members and improvement in group therapy.
It is reasonable to expect that the similarity of gender and HIV status contributes significantly to universality. Having the opportunity to listen to the stories of other members and realize the similarities they may share provides a powerful source of relief, connectedness, and hope among women who formerly believed they were alone and unique in their problems. It may be very comforting and help them feel less isolated. Knowing that other members can understand them by virtue of comparable experiences makes sharing their personal feelings easier (Edell,
1998; Emlet et al., 2002).
Imparting of Information
Imparting of information includes didactic teaching, advice, suggestions, or direct
guidance offered by the facilitator or other group member (Yalom, 1975). Didactic teaching can
include the use of guest speakers, psychoeducation, and other overt learning methods. Physician
Joseph Pratt’s class method of teaching tuberculosis patients about their illnesses is an example
of imparting information. Psychiatrists in mental hospitals in the 1920’s to1940’s also used the class method of treating patients by having formal lectures on psychiatric symptoms and other 28
relevant topics and homework assignments (Anthony, 1971; Yalom, 1975). Other methods of
imparting information used were pre-group training workshops to prepare waiting patients for
group psychotherapy, which were found to be an effective therapy modality (Yalom, 1975;
Yalom, Houts, Newell, & Rand, 1967). Instruction reduces anxiety and uncertainty by providing explanations. Giving or receiving information within the group can be therapeutic because it reduces anxiety and promotes control over uncertainty (Yalom, 1998).
In addition to didactic instruction by the group leader, another avenue for imparting information is advice-seeking and advice-giving by group members. Advice, suggestions, or direct guidance can come from within the group in the form of spontaneous feedback. Flowers
(1979) found the most helpful advice from the group members’ perspective, was advice that presented at least two alternative ways of handling a situation or advice that provided a step-by- step instructions on how to undertake something. There are both direct and indirect benefits of group members exchanging advice. The direct benefit is receiving specific knowledge; the indirect benefit is the message of mutual interest and caring (Yalom, 1998).
In support groups facilitated by a professional who does not share a positive HIV status, group member’s experiential first-hand knowledge is a necessary component. This sharing of information is part of the mutual aid function of support groups (Kurtz, 1997). Gaining knowledge and information from fellow group members and feeling cared about by their supportive ideas and advice can be therapeutic. Imparting of information can cover a broad number of helpful things learned from personal experience, such as information about doctors, medications, side effects, advice on disclosure, and information about programs and services available in the community (Emlet et al., 2002). 29
Altruism
Altruism is defined as helping another person without expecting a reward, although such a gesture may bring about the internal benefit of a good feeling, a sense of satisfaction, or increased self-esteem (Wikipedia, 2004). In a support group, altruistic helping includes offering support, reassurance, suggestions, and insight. The old biblical saying, “there is more joy in giving than there is in receiving” seems to apply here. Yalom (1975) pointed out that group members “receive through giving, not only as part of the reciprocal giving-receiving sequence but also from the intrinsic act of giving” (p. 13). Altruism plays a central role in self-help groups.
The concept of sponsorship in Alcoholics Anonymous (AA) and other 12-step-type groups confirms the importance of altruism. The helper therapy principle proposes a therapeutic benefit from the activity of helping; in helping another person, the helper is helped. The value of helping others is evident in the mutual help atmosphere of both self-help and support groups (Riessman,
1965).
As a support group member, women are seen as valuable sources of strength, knowledge, and experience. Group members have the opportunity to give this expertise to members of the group. Giving enhances feelings of self-worth and self-esteem. Many HIV+ women feel valued and have a sense of satisfaction and accomplishment by sharing their experiences to help, protect, or educate others (Foster, Stevens, & Hall, 1994). Having the opportunity to give as well as to receive enhances their self-worth and reduces feelings of powerlessness and worthlessness.
A woman becomes empowered and helps herself when she helps others, and members feel better about themselves when helping each other.
30
Corrective Recapitulation of the Primary Family Group
This factor speaks to the concept of transference. Originally conceived in Freudian theory, transference occurs when the feelings of a patient are projected onto a therapist based on a patient’s past experience (usually in the family of origin) (Freud, Strachey, Freud, & Rothgeb,
1953). Embodying various aspects of one's family of origin, the group leader and group members as sibling or parental figures, the group offers innumerable stimuli to generate intense emotions in members (Lieberman, 1975). Because the group is analogous to the member’s nuclear and extended family, working out problems with the facilitator and other group members means also working through unfinished business of long ago (Yalom, 1995). The transference tendency of feelings about parents and siblings to be transferred onto the facilitator and other group members in a group setting has been recognized (Wender, 1936).
A goal of this factor would be to replace previous unsatisfactory family experiences with a corrective emotional experience. The corrective emotional experience, a concept coined by
Franz Alexander (1956), implies that early experiences can be corrected by new experiences in the therapeutic situation. The fact that insight is often not the prerequisite of change, but rather the consequence of a positive experience in a significant relationship such as the therapeutic one, can be explained by the concept of “corrective emotional experience.” An example in a support group could be the feelings triggered in the group situation that remind the member
(transference) of past negative experiences. But this time, the groups’ actions are seen in a positive light and the emotional experience is reparative.
Women can relive, in the nurturing environment of the group (which is symbolic of the family), the emotional events of their lives and have a chance to work through and change old patterns of behavior. In speaking about a therapy group experience, Pines (1990) explained that a 31 woman expressed how group had been very important to her because she began for the first time to experience that people could be kind, that they could accept and understand her. For HIV+ women, the group experience can be a corrective, positive experience of belonging to others like a family at a time when feeling alone and left out may be detrimental to their health.
Development of Socializing Techniques
“The development of basic social skills is a curative factor which operates in all therapy groups, although the nature of the skills taught and the explicitness of the process varies greatly depending upon the type of group” (Yalom, 1975, p. 16). There may be groups created specifically to teach social skills, but even in groups that do not have learning social skills as a goal, these skills seem to be acquired through participation in groups that meet for other reasons.
Developing better socialization skills is important because our life is continuously in connection with people, be they family, friends, or strangers. A group setting encourages members to learn social skills in many ways: by observing others interacting in positive ways and imitating them, by hearing about them from co-members or the facilitator, and by using the safe environment of a group to try new behaviors. Then through accurate feedback from group members, individuals can learn about their negative social habits.
Social skills are necessary for forming and maintaining relationships, demonstrating empathy, and being comfortable in intimate relationships. Women can learn valuable social skills from observing the behavior of group members and through the experience of interacting with them. They may learn ways to navigate social situations where they may want to disclose their
HIV status and need to know appropriate boundaries in relationships with others. Women may rehearse ways of talking with a doctor, family member, or employer. Learning new social skills 32 to interact with people in a positive way is helpful to interpersonal relationships and may decrease stress by increasing one’s social support network.
Imitative Behavior
Learning is social and can be acquired through observing or by copying (imitating) others. Moreno (1940) found that persons could benefit from witnessing the therapy of another patient with a similar problem. He referred to this activity as spectator catharsis. It has been noted that apparently quiet and less active group members claim great benefit from the group because they may learn something useful simply by being in a situation where others are having critical and significant emotional experiences. Lieberman’s (1975) name for this concept is spectatorism: “It is reasonable to assume that the spectator employs some cognitive processes to make use of what others are experiencing in connection with his own problematic areas” (p.
478). The opportunity for identification can serve a therapeutic function. The Lieberman, Yalom, and Miles study (1973) indicated that the members undergoing the most change profited from incidents in which they were entirely passive observers. According to Yalom (1975), “Not only do patients learn from observing the substantive work of others who are like them, but they also learn from watching the process of others working” (p. 97).
Social learning theory approaches the explanation of human behavior in terms of continuous reciprocal interaction between cognitive, behavioral, and environmental determinants. Support groups provide an opportunity to see how others have dealt with their problems, supplying new information and models for change. Group members may watch or copy the behavior of other members they were able to get ideas from. They may modify their own behavior to imitate that of other group members. Peterson (2003) found that even negative peer role models can help others learn activities to avoid. 33
A nearly exclusive benefit to being part of an all-female HIV support group is the
opportunity to have other HIV+ women as role models. Members may witness a positive
behavior of a group member, such as assertiveness skills, and imitate it. By sharing common
dilemmas, and observing how others have successfully handled them, members can increase
their repertoire of effective coping skills.
Interpersonal Learning
Yalom (1975) credited Harry Stack Sullivan’s interpersonal theory of psychiatry as the
basis of this factor. Yalom’s three components of interpersonal learning include the importance
of interpersonal relationships, the corrective emotional experience, and the group as a social
microcosm. A basic assertion is that humans are social beings and need relationships to develop
physically and psychologically (Bowlby, Fry, & Ainsworth, 1965). As infants grow, their personalities develop because of interactions they have in significant relationships. Children continue displaying traits that provide them with approval from parents and deny characteristics that meet with parental disapproval. Personality develops as a result of reflected appraisals of parents and others, even if these appraisals are distorted. Cooley (1902) coined the idea of the
looking glass self; that is, individuals learn who they are by having appraisals of the self reflected
back to them from others. If an individual receives distorted opinions of him or herself, the
individual may incorporate these into his or her self-concept and behavior. Interpersonal
distortions tend to be self-perpetuating, and we tend to recreate the response/reaction cycle.
Interpersonal difficulties can be examined and altered in a group therapy format. Therapy
can correct these distortions by way of correct feedback, which can lead to a corrective
emotional experience. Members’ self-definition and self-worth may be enhanced as they
experience positive relationships with accurate feedback from others in the group. Feedback, the 34
information one receives about how one is perceived by peers, meets a very basic human need, the need to find out where we stand, how we are seen by others (Lieberman, 1975). Interpersonal learning may lead to the knowledge and transformation of unwanted patterns and behaviors.
A group is a “social microcosm” in that the interpersonal patterns that any member exhibits within the group are generally representative of that member’s patterns in his or her life
outside of therapy (Yalom, 1975). Members’ interaction with one another will mirror the ways they relate to people outside of group. Therefore, the group microcosm is the ideal setting for learning about one’s interpersonal impact, how it may differ from one’s intent, and how it may generate repetitive maladaptive interpersonal cycles. Within the group, an adaptive spiral results in the removal of untrue distortions so members can improve their relationships both inside and outside the group.
Yalom (1975) cited his own study (Yalom, Tinklenberg, & Gilula, 1968) of 20 successful patients and the critical incidents they described in his encounter group study of successful outcomes: All descriptions included an emotional and cognitive component. Yalom mentioned the bi-directionality of behavior inside and outside the group. Learning from interactions within the group can lead to self-understanding, breaking old patterns of behavior, and trying on new ways of relating. Women may learn from interactions within the group how to manage their healthcare and be assertive in relationships with healthcare professionals. Interpersonal learning is a multifaceted factor that involves gaining insight and understanding into one’s own behavior.
In Yalom’s Q-sort, a particular measurement method that will be explained in chapter 3, interpersonal learning is separated as input and output. Input stands for the therapeutic construct of receiving feedback from other group members about how they perceive you; Output stands for the group member learning and acting on the skills learned. 35
Group Cohesiveness
“Cohesiveness in group therapy is the analogue of ‘relationship’ in individual therapy”
(Yalom, 1975, p. 45).Yalom considered group cohesiveness as encompassing the patient’s relationship to the group therapist, to the other group members, and to the group as a whole.
Similarly, Forsyth (1999) regarded cohesion as analogous to the “glue” that holds a group together or as the strength of the bonds linking group members to the group. Group cohesion includes factors such as feeling accepted, perceiving similarity among members, and feeling valued and supported. A group is said to be cohesive to the extent that the group members like the other group members, feel that they are part of the group, want to stay in the group, and find the group important to them (Dion, 2000). In short, cohesion is a measure of the significance, importance, or attachment of group members to the group, a measure of the extent to which the group is likely to bond together and stick together.
A study by Dickoff & Lakin (1963) concluded that, from the perspective of the group therapy patient, group cohesiveness and mutual support are therapeutically valuable. The experience of social support (belonging to the group, sharing problems, commiserating with and comforting each other, feeling accepted, and perceiving similarities among members) was identified by former members as the primary mode of help in group therapy.
Cohesiveness does not equal comfort, however. Expression of difference and conflict is important in the therapeutic process. Patients’ descriptions of critical incidents in group therapy have often involved an episode in which they express strong negative affect (Yalom et al., 1968).
Yet “the group and the other members must mean enough to each other that they will be willing to bear the discomfort of working through the conflict” (Yalom, 1975, p. 64). Cohesive groups 36
are like families who may disagree and argue but have prevailing loyalty to each other and will
stick it out in the bad times.
HIV women’s support groups offer the experience of being in a community, a sense of
belonging, and being “at home” in the group. This recognition of commonalities leads to the
formation of emotional bonds among members and the experience of belonging and acceptance.
The emotional bonds allow for greater self-disclosure, a sense of ownership of the group, and a
feeling of pride to be a group member. An HIV women’s support group can function as a safe
“holding environment” (Winnicott, 1957), where women can feel secure enough to enter into
authentic meaningful bonds.
Catharsis
The Social Work Dictionary defines catharsis as “verbalization and other expression of ideas, fears, past significant events, the expected result of which is a release of anxiety or tension, resulting in improved functioning; also called ventilation” (Barker, 1995, p. 49). Breuer
& Freud (1955) used cathartic treatment on patients with the symptoms of hysteria that was attributed to unreleased emotional energy associated with forgotten psychic traumas. Their treatment involved hypnosis, during which the patient would recall and reenact the experience, releasing repressed emotions (catharsis). Freud initially considered catharsis an important
mechanism of change; he saw stifled emotions as a major impediment to mental health and a
major source of symptoms (Lieberman, 1975). Expression of feelings (both positive and
negative) about important life events is considered important. Releasing and experiencing high
emotion can have a bonding effect on all group members who experience it.
Yalom (1975) noted that catharsis must be accompanied by insight and self-
understanding to become therapeutic: 37
The Lieberman, Yalom, and Miles (1972) study and the Berzon, Pious & Farson (1963) study starkly illustrate the limitations of catharsis per se. Those members whose critical experiences consisted only of strong emotional expressions were not destined for a positive outcome. The open expression of affect is without question vital to the group therapeutic process, yet it is only a part and must be complemented by other factors. (pp. 83-84)
Self-disclosing is said to be valuable when it leads to some cognitive learning, when one understands the meaning and implications of what has been disclosed. According to Lieberman
(1975), “Self-disclosures may be seen as cathartic events” (p. 476), and sometimes the catharsis is quite spontaneous because one individual may present a situation that also has been experienced by someone else. Instead of only one person receiving the benefits, two or more can profit from the cathartic environment provided by the support group.
Fear, guilt, sorrow, resentment, anger, and other strong emotions are often experienced by women living with HIV. There can be tremendous relief in venting unexpressed, and perhaps socially unacceptable, thoughts and feelings in a supportive, safe environment. Group members are validated and their feelings legitimatized: “Members value being able to share their feelings and experience relief from such sharing” (Butler & Fuhriman, 1983a, p. 134).
Existential Issues
Existential factors refer to an individual’s feeling of group support when struggling with the realities of existence, such as death, isolation, freedom, and the sense of meaninglessness.
Existentialism is the philosophy that places emphasis on individual existence, freedom, and choice. It assumes that people are entirely free and thus responsible for what they make of themselves. Yalom (1980) found that a lack of meaning in life is associated with psychopathology, while positive life meaning is associated with strong religious beliefs, membership in groups, dedication to a cause, life values, and clear goals. People search for 38
meaning in their lives and want to make meaning out of what has happened to them. A number
of existential psychologists point out that humans require meaning to survive (Frankl, 1984;
Yalom, 1980).
When Yalom, Tinklenberg, and Gilula (1968) were creating items for the Q-sort
instrument, statements labeled existential factors were included because sentiments of therapists
and patients required them. An argument was made by Bloch and Crouch (1985) that existential
factors are indicative of a theoretical school of thought, but Yalom (1995) claimed that many
therapists are “existentially oriented.” He described the existential therapeutic approach as
“having an emphasis on choice, freedom, responsibility, meaning in life, and contingency” (p.
86). Group members who confront the reality of their fate pass into a life perspective that
includes a great sense of liberation and autonomy. There develops a sensitive appreciation of the
basic things in life. In Yalom’s (1975) framework, the existential factors encompass the
recognition that (a) life is sometimes unjust; (b) there is no escape from some of life's pain and
death; (c) ultimately, life must be faced alone; (d) life should be faced honestly, without getting
caught up in trivialities; and (e) each person must take the ultimate responsibility for the way he
or she lives.
Being diagnosed with an incurable disease raises questions about the meaning of life. By
providing a safe and supportive environment, a support group can enable women to confront
some of life's most significant issues (e.g., self-image, life goals, existential issues, etc.), which can allow her to live more fully in the face of a chronic and uncertain illness. Women often use their HIV diagnosis as a catalyst to reprioritize their goals and relationships. Helping others, in the group and outside of the group, may make their lives more meaningful. In addition to a quest for meaning in life, existential factors include “dealing with isolation, taking responsibility, 39
recognizing mortality, and determining the consequences for the quality of life” (Sivesind &
Baile, 1997, p. 250). Realization that one is ultimately responsible for oneself, combined with
information, support, and acceptance received from one’s support group, may lead to a woman’s
empowerment.
Research on Therapeutic Factors in Therapy Groups
In the next three sections research measuring therapeutic factors in groups will be discussed. These studies are presented according to three different group models: therapy, self-
help, or support groups. As previously noted, group psychotherapy is a form of therapy, based in
psychoanalytic theory, that explains how positive change results from a person’s achieving
insight into his patterns and reasons for doing things a particular way (Bloch & Crouch, 1985). In
1968, Yalom, Tinklenberg, and Gilula conducted the first study with the therapeutic factor Q-
sort, a particular measurement method that will be explained more fully in Chapter 3; they
gathered information on 20 successful long-term group therapy patients who had concluded
group therapy. The order of importance of each therapeutic factor was ranked, and the top
categories were interpersonal learning, catharsis, and group cohesiveness: “Many patients
expressed difficulty in rank-ordering curative factors because they found various factors helpful
at different stages of therapy” (Yalom, 1975, p. 99). Universality, instillation of hope, and
guidance (imparting of information) are important in early stages of group development.
Altruism and cohesiveness operate throughout all group stages. Once group cohesiveness is
established, members are more able to utilize interpersonal learning and experience catharsis. So
Yalom’s sample of successful former members may well have picked interpersonal learning,
catharsis, and group cohesiveness because they had advanced to a later stage of group development. Yalom asserted that successful group therapy is a process of emotional uncovering 40
and then reflecting and learning from that pattern. This interpersonal learning leads to insight,
which is a condition for change according to psychoanalytic theory (Yalom, 1995).
Bonney, Randall, and Cleveland (1986) used Yalom’s Q-sort (see chapter 3) to assess
therapeutic factors in a therapy group of incest survivors facilitated by a male and female co-
therapist. Seven group members completed the Q-sort and then gave an individual interview
(conducted by a counselor unknown to the members). Therapeutic factors found most often by
this homogeneous group were self-understanding (interpersonal learning), cohesiveness, and
family re-enactment. The results are highly responsive to the group member’s common issue,
incest, and the harm incest causes in the family and the individual’s development. Acceptance
and belonging (demonstrated by group cohesiveness) were probably necessary for self-
understanding and family re-enactment due to the trust dilemma reactivated through discussion
of their experiences in their families of origin.
Using a Likert scale format of Yalom’s Q-sort, MacDevitt and Sanislow (1987) studied
four male offender groups (three incarcerated and one probation) to identify the therapeutic
factors most highly rated by group members. This study was conducted using four different
populations, the similarity being that these groups were all forensic cases. The group of maximum-security segregated prisoners selected existential issues as the number one therapeutic
factor, possibly due to the powerlessness they felt in their circumstances. The outpatient
probation groups valued cohesiveness and instillation of hope most highly, possibly due to the
importance of feeling hopeful for the future. The group of maximum-security prisoners who
participated in group therapy for the longest time picked interpersonal learning as the most
important therapeutic factor, which could be a result of length of time in group and the stage of
group development attained. The minimum-security prisoners ranked catharsis as most helpful, 41 which may be explained by the fact that most of this group had been convicted of sex crimes and perhaps these prisoners felt the need to express this hidden aspect of themselves in a safe setting.
Summing the factors, the four offender populations (N = 123) rated existential factors, catharsis, and interpersonal learning as three of the most helpful therapeutic factors.
Yalom’s Q-sort was conducted with a group of eight older women (average age 55) attending group therapy for reasons including anxiety, panic, isolation, tranquilizer dependency, depression, and grief. Aggregating the rankings of the whole group, existential awareness was the single most influential factor, followed by group cohesiveness and instillation of hope
(McLeod & Ryan, 1993). A number of themes emerged: awareness of choices, awareness of death, trust in members and the leader, and the importance of socializing with themselves outside of group. Because previous studies of therapy groups found interpersonal learning to be most widely valued, the authors felt the importance of existential factors to this group of women could be related to their life-stage, which was older adulthood. Their ages, psychological symptoms, and loss of peers had likely made them more aware of the reality of death. In group therapy they were able to integrate their experiences into a review of life choices. The closed therapy group with homogeneous population (age and gender) became an empowering and meaningful experience for each woman in the study.
In 1999, Schwartz and Waldo described a psychoeducational treatment group for male spouse abusers (N = 39) that used the Critical Incident Questionnaire (Bloch & Reibstein, 1980) to assess therapeutic factors. The Critical Incident Questionnaire (see chapter 3) has members write the most helpful event of the previous three sessions. A rater codes the responses by corresponding therapeutic factors. Because of the educational aspect of this particular group, it is not surprising that the three most common therapeutic factors mentioned were: imparting 42 information, developing socializing techniques, and developing group cohesion. The group cohesion could be a result of a sense of belonging felt by the men due to homogeneity of problem (domestic violence) and gender (male).
This review of five studies shows that therapeutic factors seem to be associated with the personal circumstances of the members. Yalom et al.’s (1968) group of successful patients had recently terminated group therapy, probably because of the positive changes they had made due to interpersonal learning. The incest survivors group, which was comprised of people who came from dysfunctional families, was sensitive to family re-enactment. The four forensic populations valued existential factors that are relevant to realizing personal responsibility and coping with tough issues that require a reconciliation of one’s personal philosophy with the meaning of life.
The group of older women outpatients were clearly affected by their life cycle stage. They valued existential factors, but it is significant that they also felt accepted (cohesiveness) and hopeful, which can lead to self-empowerment. The group of male spouse abusers valued education and socializing techniques as possible ways to break the cycle of domestic violence.
These groups demonstrate that members of therapy groups arrive at and use therapeutic factors best suited to their situational and developmental needs.
Research on Therapeutic Factors in Self-Help Groups
As noted earlier, self-help groups are peer-led groups established to transform and/or reframe an identity or behavior that all members have in common (Kurtz, 1997). Llewelyn and
Haslett (1986) looked at the members of three different self-help groups to find their perceptions of the most helpful therapeutic factors. The groups studied were composed of depressives, widows, and asthmatics, respectively. Data were obtained by asking members to rank from first to tenth therapeutic factors given in statement from. 43
The depressives group (N = 9) followed a specific meeting structure. The group’s
philosophy was read out loud, and members were asked to share their experiences from the past
week. Some practical help was discussed, but the emphasis was on norms of their specific
philosophy of change, which involved attending fixed social events. It is not surprising then, that
this self-help group selected cohesiveness, universality, and interpersonal learning-output (group
member learning and acting on the skills learned in group); they perceived themselves to be
successful when the group identity was internalized (Llewelyn & Haslett, 1986).
A self-help widows group (N = 24) that was mostly social in nature but also assisted new
members in crisis with information and legal help rated universality, interpersonal learning-input
(receiving feedback from other group members), and cohesiveness as the most important
therapeutic factors. The membership saw their similar situations as a bonding force; thus
universality, the notion that one is not alone, is a strong reason for member satisfaction
(Llewelyn & Haslett, 1986).
The asthma group (N = 12) met to provide support, discuss problems, and share insights
about their condition. The group occasionally invited speakers to dispense practical information.
This group rated guidance (i.e., imparting of information), interpersonal learning-input (receiving
feedback from other group members), and altruism as most important. Members with asthma
valued the ability to obtain information (from peers and medical guest speakers) as very
important. Given the fact that asthma can be a severe health disability, the importance of exchanging factual information for these members makes sense (Llewelyn & Haslett, 1986).
In their study of epilepsy self-help group members, Droge, Arntson, and Norton (1986) studied a non-random national survey of people with epilepsy. One section of the survey used fifteen Likert scale statements assessing change mechanisms (therapeutic factors) in self-help 44 groups. Respondents (N = 100) rank-ordered the therapeutic factors, and the top three were altruism, catharsis, and universality. These factors may be understood based on the diagnosis of epilepsy, a stigmatized disease that causes its victims to experience a loss of control. In such a self-help group the members are the experts and have control over helping others. Another epileptic can empathize and share advice better than a non-epileptic, so the altruistic opportunity to help others and share feelings cathartically reinforces the sense of universality.
A descriptive study conducted to evaluate the benefits of a self-help group for women with eating disorders was conducted by Franko (1987). This researcher reported the results of an evaluation questionnaire completed by 18 group members 6 months after the group had begun.
Although this study did not look at therapeutic factors, the benefits reported by the group are comparable to the following therapeutic factors: group cohesiveness, universality, and imparting information. This study corroborates Llewelyn and Haslett (1986) and Droge et al.’s (1986) findings that self-help groups exist to meet the needs of the members. The needs vary with the issue or problem self-help group members have in common, but cohesiveness, universality and imparting of information are common therapeutic factors reported in self-help groups.
Research on Therapeutic Factors in Support Groups
Members of support groups have a common problem or life experience, and “the emphasis of the group is on comfort rather than cure” (Rosenberg, 1984, p. 178). In 1993,
Wadsworth described his observations of a support group he facilitated for individuals dealing with stress as a result of the Persian Gulf War. Although his was not an empirical study, the author used Yalom’s therapeutic factors as a framework for relating anecdotal observations. The group of 10 Caucasian women felt helpless and powerless over the stress of having a family member deployed to war. In his discussion, the author reported that he saw cohesiveness as a 45
primary factor in the helpfulness of the group. The unpredictable and intense nature of the
stressor brought up existential concerns such as mortality and “living in the context of dying” (p.
72). Cohesiveness fostered a support network where contact between members outside of group
was common and allowed for altruism. Universality was an important therapeutic factor because
the similarity of situation allowed group members to share information and advice. Although not
mentioned by the author, the homogeneity of gender and ethnicity, in addition to the common
stressor, may have strengthened group cohesion and the social network that formed outside of
the group meetings.
A recent study by Weinberg, Uken, Schmale, and Adamek (1995) sought to determine
whether computer support groups provide the same type of assistance as face-to-face support
groups in patients with cancer. Six women with breast cancer were solicited to participate in a
computer support group for three months. The results were consistent with the findings for face-
to-face cancer support groups. Instillation of hope, group cohesion, and universality were the
three most active therapeutic factors (Weinberg et al., 1995). The authors noted that having
members in different stages of the disease inspired hopefulness in recently diagnosed members.
The implication is that when living with a life-threatening illness, hope for one’s future seems to
be very important.
Glajchen and Magen (1995) looked at process, outcome, and satisfaction with support groups at Cancer Care, an agency that provides separate support groups for patients, relatives,
and bereaved spouses. Although the questionnaire used (the agency’s own group evaluation
questionnaire) was not Yalom’s Q-sort, it included 12 questions addressing group processes. The
results of this study (N = 392) indicate that universality was the highest rated group characteristic, followed by comfort, feedback, and emotional support; these results correspond 46
with Yalom’s description of interpersonal learning. Responses to open-ended questions revealed
that group cohesion and universality were highly valued by relatives of people with cancer. This
study adds weight to the evidence that homogeneous groups foster universality, cohesiveness,
and individual member satisfaction.
A support group for women with ovarian cancer was described by Sivesind and Baile
(1997). The members of this group had poor prognoses. After 6 months of meetings, the six core
members were given Yalom’s Q-sort. Sivesind and Baile only reported that existential factors
were rated highest; no other ranking of factors was given. Dealing with their mortality and
quality of life within a support group format seemed to empower these women, as well as lighten their psychological burdens (i.e., fear of disease progression and fear of death). This study adds evidence to the fact that existential issues can be addressed in a face-to-face support group with similar others.
Magen and Glajchen (1999) used the Curative Factors Questionnaire (Butler &
Fuhriman, 1983b) to survey 95 clients at Cancer Care for the most valued therapeutic factors in their support groups. The majority were members of the bereavement support groups (N = 71); the rest were from patient groups (N = 17) and relative groups (N = 7). Clients ranked cohesion, existential factors, and instillation of hope as the most important factors. The emotional bonds of dealing with a similar situation (e.g., death of a loved one, diagnosis of cancer) may increase group cohesiveness. Given the large number of members of bereavement groups, the importance of existential factors and hope makes sense.
Because much of what happens in support groups is meant to provide acceptance and empathy, the therapeutic factor of cohesiveness rates high for this group format. Universality stimulates the bonding between group members that sharing a common problem can bring. For 47
women with breast cancer and other groups facing a potentially deadly diagnosis, the therapeutic
factor of hope has indeed been comforting (Magen & Glajchen, 1999; Weinberg et al., 1995).
The impact of a stressor that triggers one to attend a support group may also initiate the
discussion of existential issues, which can bring understanding to a situation of injustice and
suffering. In the study of therapeutic factors, members perceived as most valuable in support
groups: cohesiveness, instillation of hope, universality, and existential issues, in that order.
To summarize the literature on therapeutic factors in groups, group cohesiveness was picked most often across all types of groups. This point is notable since Yalom believes
“cohesiveness is necessary for other therapeutic factors to operate” (1998, p. 27). Recall that
cohesiveness includes the feeling that members are valued, accepted, and supported by other
group members, and that Yalom likens group cohesiveness to the therapeutic relationship in
individual therapy. The importance to group members of the relational aspect of group
cohesiveness adds weight to the use of relational theory as a theoretical basis for support groups
with HIV+ women. The importance of group cohesiveness, as noted by the studies in this
literature review, may be evidence of the mutual, empathic, and empowering relationships that were established in their group experiences.
There were two self-help groups and two support groups that ranked cohesiveness as the number one therapeutic factor. Women with eating disorders (Franko, 1987), men and women with depression (Llewelyn & Haslett, 1986), families of soldiers deployed during the Gulf War
(Wadsworth, 1993), and cancer patients, their relatives, and bereaved spouses (Magen &
Glajchen, 1999) all valued cohesiveness as a primary therapeutic factor. These groups reported that the atmosphere of support and understanding, a key ingredient to group cohesion, and the 48
ability to speak freely about their problems and concerns were attributed to it. Cohesive groups
may create a climate where the bond among members is therapeutic.
There were only two studies in this literature review that found instillation of hope in the
top three therapeutic factors identified by group members. Both were in women-only groups:
Weinberg et al. (1995) studied a group of women with breast cancer (ranked as first), and
McLeod and Ryan (1993) studied a group of older women outpatients (ranked as third).
Weinberg et al. (1995) felt that having members in different stages of the disease was important
so that more newly diagnosed members could get support and hope from longer-term survivors.
In McLeod and Ryan’s (1993) therapy group, members related the importance of learning that
they had choices, which may have made them feel more hopeful. Apparently, peers can give
hope that service professionals perhaps cannot.
In the literature just reviewed on therapeutic factors present in groups, there were two
studies that showed universality as the highest ranked therapeutic factor, and four studies that
ranked universality as second or third. All of the studies that found universality important were
either self-help or support groups. In the two studies ranking universality as most important, one was a self-help group composed of widows (Llewelyn & Haslett, 1986), and the other was a
support group for cancer patients, their families, and bereaved spouses (Glajchen & Magen,
1995). Both of these groups had members who were bereaved widows. Their ability to see they
were not alone with their grief seemed to be therapeutic. The members of these groups may have
felt relief that other people in the group had experienced similar problems. Also notable in both
samples was that the majority of the participants were women by three to one. The importance of
group composition or commonality of stress implies that homogeneity can enhance group
cohesion and facilitate universality. 49
There were three groups in this literature review that cited existential factors as most
important: two therapy groups and one support group. All three group populations, male forensic
(MacDevitt & Sanislow, 1987), older women outpatients (McLeod & Ryan, 1993), and women
with ovarian cancer (Sivesind & Baile, 1997), were dealing with facing their own mortality and
powerlessness. The burden of having to face the basic issues of life and death is sometimes lightened by learning there is deep comfort (and meaning to life) in relating intimately to others
in the world. The power to make a difference in their own lives was an important factor to these
group members.
There were three studies that ranked altruism as one of the top three therapeutic factors.
Two of these were self-help groups: Droge, Arntson, and Norton (1986) studied a group of
epileptics (ranked as first) and Llewelyn and Haslett (1986) studied a group of asthmatics
(ranked as third). The other group was a support group of family members of deployed soldiers
(ranked as third). Droge, Arntson and Norton (1986) noted that epilepsy is both a medical
diagnosis and a social label. The stigma surrounding it is unpredictable, and its victims often feel
a loss of control. The same can be said for the other groups ranking altruism highly. Living with
asthma and living with a loved one deployed overseas are unpredictable and uncontrollable
situations. An altruistic act of helping a group member, however, may be understood as an
exertion of some control. In helping one another, members become the experts, not simply
passive patients or clients.
Now that the literature on therapeutic factors in groups has been compared, a review of
what is known about all-female HIV support groups will be presented. 50
Research on HIV Support Groups for Women
There is a paucity of research and information on support groups for HIV+ women and there are no studies specifically addressing group process from the standpoint of Yalom’s therapeutic factors. In this section, the author summarizes what has been written about all-female
HIV support groups and how possible therapeutic factors at work in the groups discussed can be inferred. Ribble (1989) was the first to write about HIV women’s support groups. She facilitated an all-female support group and conducted case studies on five of the women members. She used an empowerment focus and explained how support groups were used to empower the women, facilitate the process of healing, and improve their quality of life. The cases are as follows. Case one illustrates how universality, group cohesion, and hope played a part in an HIV+ IV drug- using woman changing her drug-using behavior. Case two is a woman who received correct information from the group and how this impacted her decision to conceive. Case three demonstrates how interpersonal learning and feedback from group members helped a woman realize that she could have a healthy, intimate relationship. Case four is an example of the healing component of catharsis in an HIV+ woman in denial about the seriousness of her diagnosis. Case five demonstrates how universality, sharing information, and imitative behavior empowered a woman to deal with a physician who was dismissive of her gynecological symptoms. Though Ribble did not identify Yalom’s therapeutic factors in the case studies she reported, the group dynamics she described fit the definitions of a variety of therapeutic factors.
DiPasquale (1990) reported results from her study that were relevant to HIV women’s support groups, although they were not the major focus of her study. DiPasquale assessed the outcomes of attenders of three support groups, two that were for HIV+ gay men and one that was for HIV+ African-American women, on a measure of hopelessness and a measure of anxiety. 51
The study did not address group process explicitly. It did conclude that minority women with
HIV reduced distress by participating in a support group of similar others. The women’s group
(N = 5) showed a statistically significant decrease in hopelessness after five weeks and a
decrease (though not statistically significant) in anxiety. These results add weight to the
therapeutic nature of universality and hopefulness in all-female HIV support groups.
Chung and Magraw (1992) were second to write specifically about HIV women’s support
groups. Chung, a psychiatrist, and Magraw, a social worker, facilitated a support group for three
years prior and identified issues that were important for HIV+ women. This group discussed
issues of isolation, stigma and shame, medical issues, relationships, children, and sexuality. The
therapeutic factors of hope and universality were evident in the women’s desire to find others
like themselves. These hopes facilitated group cohesiveness and interpersonal learning. An additional unexpected outcome of group attendance was women’s positive change in medical compliance, advocacy on behalf of themselves, and their willingness and desire to educate others.
Foster, Stevens, and Hall (1994) compared two group formats of support groups for
HIV+ lesbians, one a closed 12-week group and the other an ongoing weekly drop-in group.
Acceptance and validation were important to group members, as was providing feedback and fostering an atmosphere of safety, a facet of group cohesiveness. The opportunity to help oneself by helping others coincides with altruism. The women often socialized together outside of the support group and came to provide a support system for each other, reinforcing altruism and cohesion. The meetings offered a sense of belonging. The members also had the opportunity to vent difficult feelings and reveal vulnerabilities, both of which can be cathartic. They shared information related to safer sex. As women felt more empowered, they became advocates in the 52
community, helping other lesbians to be aware of risk behaviors. The group fostered the
existential factor of personal responsibility for their health, relationships, and community.
Hardesty and Greif (1994) wrote about a support group for HIV+ women who were IV
drug users in a methadone treatment program. This anecdotal paper was written to provide
information and understanding about the themes and issues that these women were facing.
Because of the family histories of sexual abuse, substance use, and violence, members brought
trust and secrecy issues into the group, which influenced group cohesion. Over time, the group
members went through periods of cohesiveness interspersed with periods where members
vacillated between verbal aggression and emotional withdrawal. The authors described examples
of group member’s tearful disclosures about their past sexual abuse and other betrayals that
appeared to be cathartic in nature. Overall, the authors concluded that there was support present
inside the group that extended outside the group during times of crisis.
A support group for mothers with HIV+ children at a pediatric clinic setting was
described by Edell (1998), who used case examples of two group members to illustrate the
effectiveness of a group-work approach. The therapeutic factors that stood out were the
following: (a) imparting of information in the form of sharing knowledge of community
resources, medication side effects, and relationship advice; (b) instillation of hope in seeing other
women living with HIV and dealing with it in a positive way; and (c) group cohesiveness, as evidenced by the bond the group members formed inside the group that extended to friendship
and caring acts outside the group.
Looking at social support and its association with survival time in women living with
HIV, Summers et al. (2000) retrospectively compared 11 women who had attended support
groups with 10 women who had not attended support groups. She found that the 11 women who 53
had attended support groups lived for a statistically significant longer period of time. Summers
et. al. claimed that support group attendance provides a sense of belonging and affirmation and a
salutary influence on survival and mental well-being that HIV+ women may not otherwise have.
The connection to other women experiencing similar circumstances recalls the therapeutic factors of cohesiveness and universality.
Emlet, Tangenberg, and Siverson (2002) presented a feminist approach to working with
HIV+ older women (age 50 and older) by describing four themes in a support group. This report of a focus group of seven older HIV+ women that turned into an ongoing support group ascertained four commonalities among these women: (a) they were excited and relieved to be meeting other HIV+ women their age, (b) they wanted information about medical aspects of HIV and aging, (c) they all had stable living situations and had come to accept their HIV diagnosis, and (d) they all felt isolated and wanted to form a support group. Their feelings of relief and excitement in meeting each other, as well as their feelings of isolation, certainly reflect the presence of the therapeutic factor of universality. Looking for medical counsel is a form of imparting information, which can be done by guest speakers, the facilitator, or other group members. The authors noted that some benefits of group membership were the woman’s empowerment to get accurate information about HIV and share that information with others both inside and outside the support group, which is a sign of altruism. The authors believe another benefit of the support group was socialization and connection among the women.
As noted, the literature on support groups for HIV+ women is limited and mostly non- experimental. The studies of support groups for HIV+ men have been examined elsewhere by
Spirig (1998). She provided a literature review of fifteen studies on support groups for HIV+ people (predominantly gay men) and found that they were generally an effective and useful 54
intervention that increased coping skills, enhanced social support, and positively influenced quality of life. Although she generally regarded the studies as useful, Spirig observed that they
lack a description of how or why they might be beneficial (i.e., the therapeutic factors). No
studies to date with HIV support groups, male-only, female-only, or mixed-gender, have used
Yalom’s therapeutic factor framework to understand what group processes are present and how
therapeutic factors are valued by group members.
In summary, a support group composed of all HIV+ women could utilize many, if not all,
of Yalom’s therapeutic factors. First, attending an HIV support group would require hope that
one would obtain some relief for her particular feelings of distress. Once she joined the group,
this hope might derive from observing other women who were living successfully. The
similarities of being HIV+ and female would allow for universality. This common situation
would lead to bonding and group cohesiveness. While sharing their stories, they might
experience catharsis. Receiving feedback from other members would facilitate interpersonal
learning and imparting of information. These mutual aid interactions would have the potential to
be altruistic. Members could learn from each other via imitative behavior and practicing
socializing techniques that they could transfer to their life outside of the group. The relationships
that developed within a group could portray a family recapitulation and serve as a reparative
experience. Dealing with the realities of living with a life-limiting illness could stir up existential
thoughts such as “why me? And how will I make sense of the cards life has dealt me?” The view
that different types of groups and different populations of group members value different
therapeutic factors is a logical conclusion when one realizes that groups differ in format and
purpose and extent of homogeneity. Knowing which therapeutic factors are seen as most helpful
and healing by HIV+ women who are satisfied (or not satisfied) with their support group 55 experience is important to making the best use of this service. Researchers and clinicians need to know which therapeutic factors are likely to be most helpful in support groups for HIV+ women. 56
CHAPTER 3
METHODOLOGY
Research Design
This study is a cross-sectional, exploratory-descriptive survey designed to measure therapeutic factors that HIV+ women perceive are present within their support groups. This chapter will (a) explain how the sample was defined and located, (b) describe the instrument created specifically for this study and used to answer the research questions, (c) outline the procedures to administer the questionnaire, and (d) explain how data were described and analyzed. This study’s questions were: (a) What are the characteristics of HIV+ women who attend all-female HIV support groups? (b)What are the reasons HIV+ women attend all-female
HIV support groups? (c) What happens inside an all-female HIV support group that HIV+ women find therapeutic? (d) What benefits do HIV+ women gain from attending all-female HIV support groups? and (e) How satisfied are they with their all-female HIV support groups experience?
There were no specified hypotheses in this study due to its exploratory nature, and the fact that very little is actually known at this time about support groups for HIV+ women. This study was undertaken to develop a general understanding of the phenomenon of all-female HIV support groups.
Sample
The unit of analysis was the HIV+ woman herself who attended a support group that specifically addressed this illness. For purposes of this study, an HIV+ woman was defined as a 57 female who has been diagnosed as HIV+ and is 18 or older. An HIV women’s support group was described as a peer or professionally-facilitated group of HIV+ women who meet regularly to talk about their experiences and provide support and encouragement to each other.
Women who were attending HIV women’s support groups in the states of Alabama,
Georgia, and South Carolina made up the population. There was no publicized list of HIV women’s support groups or of the women who attend them, making it difficult to define a sampling frame. With the purpose of identifying all HIV women’s support groups in Alabama,
Georgia, and South Carolina, this researcher contacted community AIDS service organizations listed on Project Inform’s website and requested information about HIV women’s support groups in their area. Project Inform’s website has state-by-state lists that include HIV/AIDS community- based organizations, medical services, government agencies, and other organizations that provide a range of services, including access information and referrals to local services. Four support groups for HIV+ women were identified in Alabama, ten in Georgia, and four in South Carolina.
Executive directors of nine agencies agreed in writing to support this study by allowing this researcher to invite their women’s HIV support group members to participate.
Measurement Instrument
The instrument used in this study was a 66-item questionnaire created by this researcher to answer the research questions. The instrument is composed of: 22 Likert-scale items measuring the 11 therapeutic factors, 15 demographic questions, three questions about importance of an all-female format, one question about attendance, four questions about outcomes from attendance, three satisfaction questions, and six open-ended questions addressing reasons for attendance, likes and dislikes about group, and other outcomes or general comments about their group experience. 58
Demographic questions were chosen to gain further insight into this population, including
age, ethnicity, education level, and sexual orientation. Parental status, relationship status, and
whether another HIV+ person lives in the home can shed light on the roles and caregiving
responsibilities these women have, as well as the challenges they may face; it has been
documented, for instance, that women put their children’s health care ahead of their own (Edell,
1998; Hackl et al., 1997; Hansell et al., 1999).
Questions concerning other counseling services used (i.e., individual counseling, peer
counseling, or case management services) and any social security income provide information
about emotional and financial help-seeking behavior. Demographic questions on years HIV+,
health perception, and access to the Internet were also collected.
One unique factor of women’s support groups is the homogeneity of gender, perhaps
allowing members to discuss topics not acceptable in mixed company. This variable measured
the HIV+ woman’s perspective on how important gender composition was to her and whether
this was of major importance in her decision to attend. One Likert scale item measured importance of gender composition, and two yes/no items assessed whether a mixed gender group
had ever been attended or would be attended.
A single item with four response categories (less than 4, between 4-10, between 11-20,
and more than 20) measured the number of group meetings the participant had attended. This
variable was important because higher attendance can strengthen certain therapeutic factors such
as group cohesiveness.
Twenty-two Likert scale items on a five-point scale measuring Yalom’s (1995) 11
therapeutic factors (two items per factor) were written for this questionnaire. The statements
were written by this researcher to discover the women’s perspective of support group processes 59
that were therapeutic to them. Answers range from strongly disagree to strongly agree. The
range of scores for each subscale is 0 - 8, with higher scores indicating a higher presence of a
given therapeutic factor. This information may be helpful for support group planners and
facilitators who want to emphasize and promote certain factors.
One Likert scale item and three yes/no items assessed change in feelings or behaviors as
a result of support group attendance. These changes may be unintended consequences of
attendance not yet known to researchers, facilitators, or HIV+ women. Feelings of stigma were measured as an outcome of group attendance to determine whether stigma appraisal decreases when a woman is around others who share and normalize her situation. Behaviors such as
socializing with group members can increase one’s perceived and actual experience of social
support, and medication compliance and decreased risk-taking behavior can positively influence one’s health. These changes, as possible results of support group attendance, may provide an additional rationale for the promotion of support groups for HIV+ women.
Three Likert scale items measured satisfaction with group. Two open-ended questions asked each HIV+ woman to explain what she liked best and least about the support group she was attending. Knowledge from this variable, which allows the women to evaluate their satisfaction with the group experience, may provide insight into ways to increase recruitment,
attendance, and retention of HIV+ women. Many HIV agencies have tried to start all-female
support groups, but because these groups often have had little or no attendance, these agencies
stopped providing them altogether. HIV agency case managers noticed that some “HIV+ women
either do not access or fail to follow through with women’s support groups” (Walker, 2002, p.
307).
60
Two open-ended questions, a question to clarify the original reason for attending, and a
question about the current reason for attending were asked to discover the women’s own reasons
for attending and what they were hoping to get from attending. The second question assessed
whether the reason for attending had changed. For example, a woman might originally have
come to meet other HIV+ women and then continued to attend because of information she was
getting related to medication side effects. One open-ended question assessed other benefits of
attendance, as perceived by the women, as well.
The instrument, as described above, was pilot tested with a small group of women (N =
8) from an HIV women’s support group facilitated by this researcher. The pilot test verified the clarity and appropriateness of each individual item, as well as, provided some preliminary information on reliability and validity. The pilot test was conducted during August, 2003.
Additionally, the instrument was reviewed by a content expert for content validity. The revised questionnaire, which was used in the present study, appears in Appendix A.
The Group Climate Questionnaire (MacKenzie, 1983) was added to this instrument to
provide a measure of concurrent validity for the therapeutic factors portion. Group climate is
thought to be a result of interactional behaviors that influence the therapeutic environment.
Group climate, defined as a participant’s perception of the group atmosphere, was measured in
this study with the short form of the Group Climate Questionnaire [GCQ-S] developed by
MacKenzie (1983). The GCQ-S is a 12-item instrument with three subscales: (a) engaged (i.e.,
degree of cohesion, quality of working environment, members’ engagement with one another);
(b) conflict (i.e., an aggressive atmosphere with anger and distrust); and (c) avoiding (i.e.,
members avoiding personal responsibility for group work) (MacKenzie & Livesley, 1986). The
GCQ-S is a measure of group process such as the therapeutic factors. 61
Internal consistency reliability (coefficient alpha) for the GCQ-S subscales has been reported as .95, .92, and .88, for engaged, avoiding, and conflict, respectively (Kivlighan &
Goldfine, 1991). The 12 items on GCQ-S are on 7-point Likert scales indicating degree of agreement ranging from not at all (0) to extremely (6). Correlations between the subscales were the following: engaged and avoiding -.44, engaged and conflict -.18, and avoiding and conflict
.30 (MacKenzie, 1983). Table 2 shows the original sample used to validate the GCQ-S and two subsequent studies using this scale. The GCQ-S can be completed by group members, group therapists, and/or observers.
Table 2 Group Climate Questionnaire Authors MacKenzie, 1983 Kanas et. al., 1989 Kivlighan & Angelone, 1992 N = 75 N = 5 N = 61 Sample Male & female Co-therapists of an Male & female outpatients outpatient group for college students schizophrenics Engaged Mean 17.85 14.86 18.51 Standard Deviation 4.68 * 2.82 Conflict Mean 2.54 1.51 2.60 Standard Deviation 2.46 * 1.58 Avoiding Mean 8.17 7.66 7.31 Standard Deviation 4.02 * 2.81 * Standard Deviation not available
There were three instruments for measuring therapeutic factors identified by the author that were not suited for the purposes of this study: Yalom’s (1975) Q-sort, Lese and MacNair- 62
Semands’ (2000) Therapeutic Factors Inventory (TFI), and Bloch, Reibstein, Crouch, Holroyd, and Themen’s (1979) Most Important Event measure. Yalom’s Q-sort and the TFI are both self- report direct measures of therapeutic factors. The Most Important Event measure is an open- ended question, which is an indirect method of measuring therapeutic factors from the perception of the group member. Each measure is explained in detail below.
Yalom’s (1975) Q-sort uses five statements to measure each category of therapeutic factors (the 11 factors reviewed in chapter 2, with interpersonal learning divided into input and output) making a total of 60 items. Statements are written on index cards and given to a participant, who places each of the cards into seven piles. The Q-sort itself takes approximately thirty to forty-five minutes to complete. Then participants are then interviewed to determine the reasons for their choices. This measure can be quite time-consuming and laborious for both researcher and participant. Another derivative of Yalom’s Q-sort, the Curative Factors
Questionnaire (Butler & Fuhriman, 1983b), is a self-report questionnaire, using the 60 statements in Yalom’s Q-sort and changing them to a 4-point Likert scale ranging from not helpful to very helpful.
A scale based on Yalom’s 11 therapeutic factors was developed in 2000 by Lese and
MacNair-Semands and was called the Therapeutic Factors Inventory (TFI). The TFI assesses group member perceptions of the degree of the presence of the 11 therapeutic factors. The scale has 11 subscales, with nine items per scale, measuring each of Yalom’s therapeutic factors. This instrument was also designed for counseling groups under the assumption that the group member is an individual in need of rehabilitation.
The Most Important Event (also called the Critical Incident Questionnaire) has participants describe their most important event or moment in the group; responses are then 63
coded and categorized by independent raters into the therapeutic factors present during the
incident. The data are used to determine therapeutic factors in group process, but this method was believed by the authors to be less biased because it does not ask members specifically about therapeutic factors (Bloch et al., 1979). This instrument assumes that an event in group therapy inspires change in a patient with a character deficiency; furthermore, its reliance on a test interpreter to categorize the event into therapeutic factors may obscure the client’s viewpoint.
The instruments just described are incompatible with support groups due to the different
ideology in therapy group format (i.e., the assumption of the “patient” being mentally ill and in
need of change) and the support group format (i.e., the assumption is that the trauma is the
problem, not the group member).
Once this researcher had reviewed the preceding instruments designed to measure
therapeutic factors, none seemed specific to or appropriate for support groups. Because of the
differences in the goals, format, and ideology of support groups, the 66-item self-report
questionnaire previously described was designed by this author to address specifically each of
the study variables. This study is firmly rooted in the support group principle that people who
attend support groups are not mentally ill; rather, they are coping with a difficult situation that
they find themselves in. Accordingly, the self-report questionnaire explores helpful group
processes using Yalom’s therapeutic factors framework with support group membership in mind.
Procedures
Verbal and written approval was obtained from the identified agencies to contact the
facilitators of the groups, describe the study goals, and request permission to address the group
members in writing to solicit their possible participation. Inclusion criteria were (a) self-
identified HIV+ women that are attending a support group specific to their illness, (b) ability to 64
provide verbal and written informed consent, (c) ability to read and write in English or have
someone read, translate, and complete the questionnaire on her behalf, and (d) age of at least 18
years at the time of this study.
After receiving letters of support from each participating agency and obtaining approval
by the Institutional Review Board at the University of Georgia, the researcher contacted each
group facilitator and requested permission to invite her group members, in the form of a cover-
letter, to participate in this study by completing a brief questionnaire. The researcher asked for
the number of questionnaires, corresponding to the average number of group attenders, to be
sent. A packet of questionnaires was sent to the facilitators in October 2003 to distribute at their next support group meetings. The facilitators were to collect the completed questionnaires and mail them back to this investigator in the postage-paid envelop provided.
Once the individual group members were informed about the study by their group facilitators, the researcher approached the group members in writing to solicit their participation.
If the participant was willing and able to provide informed consent, she was given a questionnaire to complete. Consent was implied by completion of the questionnaire. The survey was anonyomous and did not collect any personally identifying information. Data analyses present only aggregated statistics. The instrument was designed to take approximately 20-30 minutes to complete and the researcher compensated each woman $5 for completing the survey.
Data Analysis
The questionnaire collected both quantitative and qualitative data. The analysis of data are explained as related to the research questions of this study.
The first research question addressed characteristics of HIV+ women who attend all- female HIV support groups. Demographic data were analyzed through descriptive statistics. 65
Question two addressed the reasons HIV+ women attend all-female HIV support groups. Data from two open-ended items on the instrument were analyzed through content analysis to produce the themes given for attending group. Question three looked at therapeutic factors present inside an all-female HIV support groups using Yalom’s framework.
Since the study focused on the therapeutic processes that occur in groups, means and standard deviations of each of the 11 therapeutic factors were analyzed to rank order these factors according to their perceived presence in the group. The rank ordering was used to compare results from this study with previous research. Pearson product moment correlation coefficients were calculated to determine relationships between each of the 11 therapeutic factors with the subscales (engaged, conflict, avoiding) of the GCQ-S. Cronbach’s alpha was used to measure internal consistency of the 22 Likert scale items.
Research question four looked at benefits and outcomes HIV+ women gained from attending all-female HIV support groups. Descriptive statistics were used to analyze the quantitative data from four questions. Content analysis was used to obtain themes from one open-ended question. Question five measured member satisfaction with their all-female HIV support group experience. These Likert-scale items were summed to obtain statistical means, standard deviations and percentages. Two open-ended questions were analyzed through content analysis, categorized according to theme, and reported descriptively. A complete record of the qualitative responses is included in Appendix B. 66
CHAPTER 4
RESULTS
This chapter details the major findings of the study by research question. These questions
were: (a) What are the characteristics of HIV+ women who attend all-female HIV support
groups? (b) What are the reasons HIV+ women attend all-female HIV support groups? (c) What
happens inside an all-female HIV support group that HIV+ women find therapeutic? (d) What
benefits do HIV+ women gain from attending all-female HIV support groups? and (e) How
satisfied are they with their all-female HIV support groups experience?
The first research question assesses characteristics of this sample. Seventy-one women
from nine support groups in Alabama, Georgia, and South Carolina completed questionnaires.
The participants ranged from 18 to 57 years of age (M = 38.95, SD = 8.56). The participants had been diagnosed with HIV for an average of 7.40 years (SD = 4.30), with a range from 1 to
18 years.
The majority (65%) of the participants were African American; 20% were Caucasian, and
15% were biracial, American Indian, or Hispanic. Thirty percent (30%) had less than a 12th grade education. The relationship status of the participants showed considerable variation: 56% of the women were single with no significant relationship, 20% of the women were married, 13% had live-in partners, and 11% had a partner who lived elsewhere. The sexual orientation of the women was primarily heterosexual. Thirty-two percent (32%) of the women did not have children, 25% of the women had a child or children who did not live at home, 20% were parenting one child, 10% were parenting two children, and 13% were parenting three or more 67 children. Nine percent (9%) of the women had an HIV+ child. The demographic variables are summarized in Table 3. 68
Table 3 Demographics of Participants (N = 71) Variable Frequency Percentage Age 18-29 9 12.6 30-39 29 40.6 40-49 25 35.0 50-57 8 11.2 M = 38.95 SD = 8.56 Range 18-57 Years HIV+ M = 7.40 SD = 4.30 Range 1-18 Ethnicity African American 46 64.8 Caucasian 14 19.7 Biracial 2 2.8 American Indian 1 1.4 Hispanic 1 1.4 Did not respond 7 9.9 Education Less than 12th Grade 21 29.6 High School Diploma 23 32.4 Some College 21 29.6 College Degree 6 8.4 Relationship Status Single 40 56.3 Married 14 19.7 Live-in Partner 9 12.7 Partner Lives Elsewhere 8 11.3 Sexual Orientation Lesbian 4 5.6 Heterosexual 55 77.5 Bisexual 5 7.0 Did not respond 7 9.9 69
Parent No 22 31.0 Yes, none at home 19 26.8 Yes, one child home 14 19.7 Yes, two children home 7 9.9 Yes, three children home 8 11.3 Yes, five children home 1 1.4 Parenting HIV+ child No 65 91.5 Yes 6 8.5
With respect to physical health, 20% of the women reported their physical health to be excellent, 27% said they had very good health, 36% reported good health, and 17% reported fair health. Thirty-four percent (34%) of the women had another HIV+ person living in the same home with them; 66% did not. Finally, 52% of the women had access to a computer with an
Internet connection, 45% did not, and 3% did not say either way.
Looking at social support services utilized in this study in addition to the all-female HIV support group participants attend, the following services were reported: 30 women (42%) in this study had received individual counseling, 22 (31%) had received peer counseling, 46 (65%) had received case management services, 22 (31%) had received help from self-help groups (e.g., AA,
NA, Al-anon), and 3 (4%) had received help from Internet support groups. Twenty five percent
(25%) of the women in this study were currently in treatment for an addiction, which may explain the attendance at self-help groups. Fifty six percent (56%) of participants were receiving social security disability, which demonstrates that they were accessing financial resources that they were qualified to receive. 70
Although 52% of the women in this study had access to a computer with an Internet connection, only 4% identified that they utilized this resource. Table 4 summarizes these biopsychosocial characteristics. Attendance was measured using the following ranked categories: less than 4, between 4 and 10, between 11 and 20, and more than 20. Table 5 summarizes level of attendance in the sample.
Table 4 Biopsychosocial Characteristics (N = 71) Variable Frequency Percentage Physical Health Fair 12 16.9 Good 26 36.6 Very Good 19 26.8 Excellent 14 19.7 Receives Disability No 31 43.7 Yes 40 56.3 In treatment for an addiction No 53 74.6 Yes 18 25.4 Another HIV+ house member No 47 66.2 Yes 24 33.8 Has home access to Internet No 37 52.1 Yes 32 45.1 Did not respond 2 2.8
71
Table 5 Attendance (N = 71) Variable Frequency Percentage Number of times Attended Less than 4 11 15.5 Between 4 and 10 23 32.4 Between 11 and 20 17 23.9 More than 20 19 26.8 Did not respond 1 1.4
The second question addressed original and current reasons women attended all-female
HIV support groups. Qualitative data were obtained to determine the original reasons women
gave for attending group. Sixty-nine participants gave brief comments. The themes identified were (a) needing support and help with coping, (b) wanting to meet and interact with other HIV+ women, and (c) obtaining HIV-related information. Twenty-nine participants said they attended the group for support. Women gave examples of wanting support in “dealing with having HIV,” which included expressing their feelings, having a place “to vent,” gaining insight from the other women into how to live with HIV, and receiving help in coping with their situation on a
“positive level.”
Twenty-three women specifically mentioned that the reason they attended group originally was to “be around other women who are HIV+” and “to meet others like myself.” The theme of wanting to meet and interact with other HIV+ women was copiously mentioned. The
theme of attending a support group to gain information about “issues of living with HIV” was
listed by 11 participants.
Qualitative data were also obtained to determine the current reasons women attend the
support group. Sixty-seven out of 71 participants explained why they were currently attending their support groups. Themes identified were (a) needing support and help with coping, (b) 72
wanting to interact with other HIV+ women, (c) obtaining HIV-related information, and (d)
desiring acceptance and understanding. Twenty-eight participants said that their “current reason
for attending is support from others,” “to cope with loneliness,” and “to have a support system.”
“Fellowship” with other HIV+ women who they could identify with and relate to was mentioned
by 17 participants as a reason they were currently attending. Ten participants continue to attend to get more “valuable information” and better their “understanding of this disease.” Seven women continued attending because they felt accepted and understood by other members.
The third research question explored group dynamics that occur within the support group, as measured by therapeutic factors and the Group Climate Questionnaire. Group climate was measured using the Group Climate Questionnaire-Short Form [GCQ-S] (MacKenzie, 1983) which has three subscales: engaged, conflict, and avoiding. The results from this study’s sample for the five engaged items measuring cohesion and support had a mean of 18.50 (SD = 5.54). The possible range for the engaged subscale was 0 - 30, with higher scores indicating more connectedness to the group. The four conflict items measuring aggression had a mean of 4.12
(SD = 5.17). The possible range of this subscale was 0 - 24, with lower scores reflecting less group conflict. The three avoiding items measuring a disconnected climate had a mean of 9.56
(SD = 4.11). The possible range of the scores was 0 - 18; lower scores suggest less avoidant behavior.
Reliability analysis (coefficient alpha) of the five engaged items in this study was .69, the four conflict items was .85, and the three avoiding items was .58. These reliability scores were somewhat lower than the instrument’s author found: .95, .88, and .92, for engaged, conflict, and avoiding, respectively (Kivlighan & Goldfine, 1991). This may be due to the GCQ-S author’s sample being male and female outpatients in group therapy, whereas, the present study’s sample 73
was all-female support group members and the goals of group therapy are inherently different
from that of a support group’s focus as was previously explained in Chapter 1.
The GCQ-S can be useful as an indicator of group cohesiveness and was included to
provide concurrent validity for the findings on Yalom’s therapeutic factors. Correlations were
calculated using Pearson’s product-moment correlation coefficients between the totals of all 71
participants on the 22 therapeutic factor statements and the three subscales of the GCQ-S.
Relationships occurred in the direction anticipated. Correlations were the following: engaged (r
= .397, p < .01), conflict (r = -.025, p < .85), avoid (r = .166, p < .20). The engaged subscale
provides concurrent validity to this study’s questionnaire by generating similar results for
comparable constructs (i.e., Yalom’s cohesion and MacKenzie’s engagement).
Therapeutic factors were measured using 22 Likert scale items (two items per factor)
written for this questionnaire. Reliability analysis of these 22 items by coefficient alpha was
.966. This strong measure of reliability reflects a high degree of uniformity among the 22 items.
The therapeutic factors were placed in rank order (see Table 6) to compare with previous research in other populations.
In addition, the fourth question explores outcomes from attending the support groups.
Four quantitative questions collected data on reduction of HIV stigma, socialization with other group members, medication compliance, and reduction of risk behavior. Regarding stigma reduction, 46% of the women strongly agreed and 21% agreed that because of participation in their support group, they felt less shame about having HIV. Seventy percent (70%) of the women reported that they socialized outside of the support group meetings with each other. Forty-eight percent (48%) of the women had improved their medication compliance as a function of group
74
Table 6 Ranking of Therapeutic Factors Therapeutic Factor Mean Standard Deviation Hope N = 70 7.50 1.56 Altruism N = 70 7.40 1.27 Universality N = 71 7.25 1.57 Cohesiveness N = 70 7.14 1.53 Existential N = 71 7.08 1.50 Socializing N = 70 6.92 1.50 Imitative N = 71 6.78 1.68 Information N = 71 6.70 1.81 Family N = 70 6.67 1.70 Catharsis N = 70 6.61 1.80 Interpersonal Learning N = 70 6.58 1.91
attendance. Sixty-five percent (65%) of the women had decreased their risk behavior for re- exposure (see Table 7).
An open-ended question was used to obtain qualitative data from participants to determine, in their own words, what, if anything, they had done differently as a result of attending the group. Participant answers were in the form of changes they had made behaviorally, affectively, and cognitively. The themes identified were (a) taking better care of themselves physically and emotionally, (b) improved relationship skills, and (c) a change in thinking about themselves. Taking better care of themselves physically and emotionally was mentioned 23 times. The impact on one woman’s behavior was that she “stopped having unprotected sex.” Another woman said that since attending the support group, she had been able to “talk about how I really feel; I express my inner feelings more.” Other changes in behavior since attending group included improved relationship and socialization skills, cited 22 times.
Seventeen women revealed changes in their attitudes, particularly about themselves. They spoke 75
Table 7 Outcomes of support group participation
Variable Frequency Percentage Stigma Reduction Strongly Agree 33 46.5 Agree 15 21.1 Neutral 9 12.7 Disagree 3 4.2 Strongly Disagree 9 12.7 Did not respond 2 2.8 Socialize Outside Group No 21 29.6 Yes 50 70.4 Medication Compliance No 11 15.5 Yes 34 47.9 Does not apply 25 35.2 Did not respond 1 1.4 Reduced At Risk Behaviors No 4 5.6 Yes 46 64.8 Does not apply 20 28.2 Did not respond 1 1.4
of self-empathy (“I am not ashamed of my condition”) and increased empathy for others (“I try to understand different situations and how they affect each individual”).
The fifth research question measured level of satisfaction with the group, including the likes and dislikes about their particular groups, the importance of the all-female format, and other general comments. Participants reported being very satisfied with their support group experience.
Three Likert-type items relating to participants satisfaction with their group experiences were 76
summed to measure this variable. The sum had a possible range of 0 – 12. The mean of this
sample was 10.78 (SD = 2.12).
Furthermore, two open-ended questions were posed, to obtain qualitative data from
participants to determine, in their own words, what they liked best and least about their support
groups. The themes addressing what they liked best were (a) being with the other women in the
group, (b) the acceptance and positive environment, and (c) the ability to talk about sensitive
issues. Sixty-eight women wrote a response about what they liked about their support group.
There were 30 examples of how “getting to know women who are in the same situation as I am”
constituted one of the therapeutic aspects of a group. Feeling accepted and feeling the positive
group environment was mentioned by 16 women as what they liked best. Similarly, the safety
and “comfort level” of the group was mentioned 20 times. One woman, referring to what she
liked best about her support group, simply said, “I like everything.”
The themes addressing what they liked least were (a) poor participation, (b) length and
frequency of meetings, and (c) problems with member personalities. Fourteen women
specifically mentioned poor participation as an obstacle to the effectiveness of group meetings.
Six reported that they wanted to meet more often then they did and for a longer period of time.
Ten respondents claimed that other members’ personalities or behavior was troublesome. Of the
60 women who responded to what they liked least, 19 said “nothing” as their answer.
Gender was an important aspect of the group format, according to these participants.
Fifty percent (50%) of the women reported that having an all-female format was very important to them and 12% reported that it was important. Fifty six percent (56%) of the women indicated that they had attended a mixed-gender HIV support group in the past; furthermore, 80% of the 77 women said that they would attend a mixed-gender HIV support group if an all-female group were not available (see Table 8).
Table 8 Importance of All-Female Format (N = 71) Variable Frequency Percentage All-Female Format Very Unimportant 6 8.5 Unimportant 1 1.4 Neutral 2 2.8 Important 12 16.9 Very Important 50 70.4 Attended Mixed Gender No 31 43.7 Yes 40 56.3 Would Attend Mixed Gender No 14 19.7 Yes 57 80.3
An open-ended question at the end of the instrument invited the participants to make any comments they would like regarding their support group experiences. Forty of the seventy-one women participants included their additional observations. Overwhelmingly, the comments about their group experiences were positive. The themes identified were (a) encouraging HIV+ women to attend support groups, (b) sharing hope and help with other women, and (c) sharing how beneficial and helpful the support groups had been to them. “I would like there to be more support groups for women who are HIV+ and more advertisement about them,” recommended one participant. This example of encouraging other HIV+ women to attend support groups shows the high value the women place on support group. Eighteen comments focused on sharing hope and help with other HIV+ women. As one woman put it, “I have become more open and can discuss my problems. Hopefully, someone can relate to my situation and benefit. Our group is 78 working hard to get other [HIV+ women] involved. We are a family.” Lastly, participants cited their feelings about how beneficial the support groups had been to them: “Thanks for helping me to be the woman I am today!” A complete record of the responses is included in Appendix B. 79
CHAPTER 5
DISCUSSION
The purpose of this study was to develop an understanding of the phenomenon of all- female HIV support groups and to understand the therapeutic factors underlying all-female HIV
support groups. The research questions examined in this study included the following variables:
(a) characteristics of women who attended the support groups, (b) reasons women attended the
support groups, (c) therapeutic factors present within the groups, (d) cognitive and behavioral outcomes as a result of support group attendance, and (e) satisfaction with their support group experience. In this chapter, the findings are discussed in light of relational theory and Yalom’s
therapeutic factors framework.
Many women identify themselves in terms of their relationships with children, partners,
friends, parents, and others (Castaneda, 2000). Relationships form the basis for growth and
development for women, and fear of disconnection tends to influence decision-making.
Relational theory acknowledges that the primary motivation for women throughout life is to
establish a strong sense of connection (Miller, 1991). Being diagnosed with HIV, a stigmatized
and socially unaccepted illness, coupled with a woman’s fear of disconnection may keep her
isolated and lacking support and empathy. Viewed through a relational model lens, an HIV
diagnosis is understood as a disconnection in women’s lives; HIV+ women’s efforts to try to
hide their diagnosis to protect current or future relationships are understood not as pathology, but
as an active strategy to maintain connection with others. The fear of losing a relationship is an 80
important aspect in the decision to disclose one’s HIV status (Goggin et al., 2001). Rather than
risk rejection or judgment, an HIV+ woman may not share her HIV diagnosis with anyone.
According to Yalom, the power to change lies within therapeutic factors activated through group dynamics. According to relational theory, connection with others is a key
component of action and growth (Jordan et al., 1991). The commonality between therapeutic
factors (in support groups) and relational connection is the peer interaction necessary for both to
develop. However, relational theory sees meaning in life being fulfilled in mutually empathetic
and empowering relationships. Relationships are as important to HIV+ women as they are to
women in general. A woman living with HIV may feel the need to disconnect herself from
relationships for fear of rejection, thus, she may be constantly lacking the most powerful
resource she needs: empathetic mutual relationships. HIV+ women want to find a place where
they can connect and belong. Evidence from this study demonstrates that support groups may
provide the potential these women need for connection and the opportunity to heal and grow.
Based on relational theory, Fedele and Harrington (1990) outlined four healing factors
that operate specifically in women’s groups: (a) validation, (b) empowerment, (c) self-empathy,
and (d) mutuality. These factors are a result of curative connections made among women in
groups. Fedele and Harrington’s four healing factors parallel certain concepts in Yalom’s
therapeutic factors and also offer support to the findings of this study. The first factor, validation,
is similar to universality: the feeling of being understood by another person validates one’s sense
of self. In this study, participants rated universality the third most important group process factor.
This study’s questionnaire measured universality by asking participants to respond to the
following two statements (strongly disagree to strongly agree): “It is helpful to see the
similarities I have with other women” and “In group, I realize that my problems are not unique.” 81
Both statements address a sense of relief in knowing one is not alone but understood and validated. Words from the women in this study clearly emphasized the importance of universality to them. Many participants specified the desire to be understood by someone who is
“like me.” The opportunity to meet other women facing the same diagnosis was a reason given by several women in this study for their attendance. According to this study, strong identification with the other HIV+ women was highly therapeutic. “It helps to be around women who can understand me and I can understand them,” said one participant. Women who come to support groups often believe that they are alone with their problems. They meet other women and learn they are not alone. The women in the support group may provide feelings of validation and comfort as they help each other realize they are not alone. This support is unique and has a greater potential for empathy due to peers understanding what it is like to live as a woman with
HIV (Emlet et al., 2002).
The second factor, empowerment, refers to members’ energy, power, and effectiveness.
This relational factor is similar to existential factors, ranked as fifth in this study, of Yalom’s 11 therapeutic factors. The study’s questionnaire measured existential factors by asking participants to respond to the following two statements: “This group helps empower me to make a difference in my own life” and “The group supports me in finding my truth.” The qualitative responses corroborate the value of empowerment by showing how the support of the group had empowered some of the participants to make important behavioral and cognitive changes in their lives. With support from the group, a power emerges from connectedness and can be carried over into other arenas of life where a woman acts on her own behalf. Other facilitators of support groups for
HIV+ women have found group attendance improved women’s choices and decision-making for the better (Chung & Magraw, 1992; Ribble, 1989). 82
The ability to face the responsibility for one’s own life and future and for making
meaning out of one’s difficulties can be strengthened by group memberships (Duhatschek, 1989;
Lantz, 1984; Sivesind & Baile, 1997; Yalom & Lieberman, 1991). As a result of being in an all- female HIV support group, the participants in this study may have had an opportunity to find meaning in their HIV diagnosis and receive group support for making positive changes in their lives. Other support group attenders have reported the ability to find meaning in a health crisis
(Greenstein, 2000). A survey of 232 disease-related support group participants found that 39% of participants reported not only that life had taken on new meaning since they had begun participating in a support group but also that more than half the members reported increased self- confidence when dealing with physicians (Trojan, 1989).
The third factor, self-empathy, refers to a way of viewing oneself in a more humane and accepting light. The therapeutic factors of group cohesiveness and imitative behavior, ranked fourth and seventh in this study, respectively, and in combination have the effect of promoting
self-empathy. Group cohesiveness in this study was measured by asking participants to respond
to the following two statements: “I feel like I am accepted by the group” and “There is a bond
among the women in the group.” Interactions with an empathetic and accepting support group
can enhance self-empathy. Imitating the understanding and acceptance shown by the group
members towards herself is a form of learning from others’ example. If a woman’s feelings about
being HIV+ are dissociated because of harsh self-judgments or previous judgmental
relationships, she may lack self-empathy and self-compassion. Several qualitative comments on
this study’s questionnaire spoke to the quality of self-empathy that came as a result of belonging
to a support group: “I feel better about myself,” “I am not ashamed of my condition,” “I accept
myself as a worthy member of society,” and “I am less ashamed of my HIV.” 83
Group cohesion tends to be greater in a more homogeneous group (Glajchen & Magen,
1995), thereby promoting acceptance and understanding, bonding the group members, and normalizing feelings. Members tend to be attracted to a group when they feel that their participation is valued and when they feel they are well-liked (Toseland & Rivas, 2001). Support groups for HIV+ women tend to be member-centered and also utilize cohesion therapeutically.
Some members in this study described their support groups as “family,” indicating how much they valued each other. A support group with a rich, nurturing environment, might offer group members family-like attachments.
Imitative behavior occurs in support groups for HIV+ women when they learn from other group members constructive behavior (e.g., problem-solving skills, being assertive, being empathetic, being supportive) that they can emulate. Group participation has been found to improve members’ view of themselves (Adamsen, 2002). When an HIV+ woman imitates the group’s nonjudgmental attitude and empathy she may internalize a more accepting view of herself. Participants in this study noted: “I love myself more” and “I accept myself.” Leenerts
(1999) found that when HIV+ women experienced caring and support from others they began to care for themselves; their self-empathy and empathy for others tended to increase. Changing one’s belief about self from blameworthy to valuable may encourage an HIV+ woman to appreciate herself and as a result improve her outlook on life.
Mutuality, the fourth healing factor, refers to a form of giving and being supported
(Fedele & Harrington, 1990). According to this study’s participants, the act of giving and receiving was important and therapeutic: “Help me and I can help other people.” Altruism was ranked as the second highest therapeutic factor. This study’s questionnaire measured altruism by asking participants to respond to the following two statements: “I feel good when something I 84
said helps another member” and “I like to offer advice and feedback when it may be of
assistance to someone in group.” Mutuality is important to HIV+ women because it reaffirms
their ability to be needed, which can be very important to a woman who may feel worthless
(Foster et al., 1994).
Helping others generally makes a person feel good and worthwhile, and doing so may
help members put their own problems into perspective and see they are not alone. It directs
attention away from one’s own problems and onto each others’ needs and concerns. These
results suggest how important it is for an HIV+ woman to be involved in mutual participation;
she comes to a support group not only to receive support but also to give support. This giving
spirit was apparent in the comments made by participants about their reasons for attending: “to
be there for women who are just learning about their situation” and “to help our members
improve their life, in living and coping with HIV because we have people attending now who
really need support.” Also mentioned was wanting to “educate and help other women.” Being
able to help others with HIV has been found to be a common coping strategy of being a long-
term survivor of AIDS (Barroso, 1997; Reeves, Merriam, & Courtenay, 1999).
Emlet, Tangenberg, and Siverson (2002) believed that HIV+ women’s desire to help
others in the support group reflects their socialization in the role as caregiver. The benefit of
giving help to the other group members was that they received validation and emotional support
in return. Because they empower and show the strengths an HIV+ woman has to offer, altruistic
acts can be an antidote to feelings of hopelessness and powerlessness. This reciprocal helping is valued by and valuable to the group members. These findings suggest that encouraging women to help each other can be a positive coping strategy. It provides them with unique benefits: 85
feeling needed and important, feeling validated and accepted, and gaining self-worth and self-
esteem.
Women’s groups offer a unique context of healing that has been acknowledged by Fedele
and Harrington and others (Gibson & Myers, 2000; Hardesty & Greif, 1994; Tantillo, 1998). The four healing factors, validation, empowerment, self-empathy, and mutuality, play key roles in affirming a woman’s experience. Identifying the presence of healing factors found in women’s groups that coincide with the therapeutic factors found in this study adds credence to the use of relational theory as a framework for this study. Further support for the relational framework can be found by applying relational principles to group process in a population of women who attend all-female HIV support groups.
In her article “Relationships in Groups: Connection, Resonance, and Paradox,” Fedele
(1994) asserted that healing in groups can be framed using the relational concepts of (a) paradox,
(b) connection, and (c) resonance. This relational framework, which makes use of circular causality, may apply to support groups for HIV+ women. Not wanting to disclose her HIV status
to others, a woman may decide to attend a support group for HIV+ women and automatically
identify herself as HIV+ to the group members. This paradox illustrates how disconnection can
lead to new connections with other HIV+ women who understand this reaction to an HIV diagnosis. When the women discuss feelings of fear, vulnerability, and disconnection with their situations, other members can empathize with these feelings. One participant in this study shared this sentiment: “With the support group sisterhood, I feel free to talk about whatever is going on with me. For many years, I didn’t have anyone to talk to about this. Now I feel better. I know I can live like other people.” The connections created in the group are authentic, mutually validating, and empathetic. These connections offer hope that, despite an HIV+ members’ 86
strategies to protect herself, the creation of growth-enhancing relationships can indeed happen
and often does in the safety of the group. A group member explained, “I have made friends who
understand what I’m going through.”
Resonance refers to the power of experiencing someone’s empathy in a healing
connection. Women are empowered to experience empathy with themselves when they
experience empathy from others. From another participant’s perspective, “Women need to know
they are not alone. Coming to this kind of group opens up a lot of doors for them. They will feel loved instead of feeling like they are nothing.” Attending a support group for HIV+ women might offer relational opportunities to create meaningful connections from the experience of
living with HIV. To summarize the healing connections that woman’s groups provide from a
relational perspective, Fedele and Harrington (1990) stated,
As the group’s relational context provides new opportunities for mutually enhancing exchanges, it can remobilize the growth-oriented relational capacities within each member. Gradually, over time, experiences of mutuality can dismantle and clear away the “scar tissue” that formed as a consequence of disconnections. The group’s relational context can provide a rich and safe medium for healing in connection and the development of new patterns of relationship. (p. 6)
One of the key features of relational theory is understanding and being understood by others.
Relationships are a way to defy the isolation that brings women to HIV support groups in the first place. This two-way process empowers and enhances connections. Mutual relationships allow women to help each other, which can increase their feelings of competence and self- efficacy.
Disconnection and isolation characterizes the experiences of most HIV+ women. Joining an all-female HIV support group counters disconnection by building empathetic relationships with other HIV+ women. As a result of these important connections, women develop a sense 87
self-worth and self-empathy and exude the five qualities of growth-enhancing relationships: zest,
empowerment, understanding of self and others, authenticity, and desire for more connection
(Miller, 1986). Connection, not disconnection, is the guiding principle of growth and healing for
women. Therefore, the healing/therapeutic factors of: (a) validation/universality, (b)
empowerment/existential factors, (c) self-empathy/cohesiveness and imitative behavior, and (d)
mutuality/altruism are essential in an environment that will foster growth in HIV+ women.
Relational theory has provided a basis for understanding how support groups for HIV+
women are valuable and therapeutic. Now that some of the beneficial processes of support
groups for HIV+ women have been illustrated, the reasons for attending will be discussed.
Reasons for Attending Group
Participants in this study shared similar reasons for attending their support group.
Needing support and help with coping were mentioned most often. The participants in this study
felt that other HIV+ women would understand their concerns better: “I needed support from
people who are going through the same thing.” This finding is confirmed in the literature that has found that HIV+ women want to share their concerns with others who are experiencing the same types of isolation and pressure (Bunting et al., 1999; Hackl et al., 1997). Other studies have found the primary reason for joining a support group to be emotional support (Magen &
Glajchen, 1999; Morrow et al., 2001). Many respondents considered emotional support from other HIV+ women as the reason for attending an all-female HIV support group for women. “We as [HIV+] women need support from one another,” said one woman.
Women specified an interactional desire to receive and give help with women who shared their illness. Originally, the participants wanted to meet other HIV+ women; they continued attending the support group because of the connections made with these women and because 88
they wanted to continue the relationships they had established. Comments such as the following
express the relational connections members had made in the group and valued: “I like all of the
people I have grown to know” and “I have made friends who understand what I’m going
through.” Attending a support group for HIV+ women may be seen as satisfying the desire for
empathetic mutual connections. Accepting, understanding, and nurturing, has been found to be
helpful in other HIV support groups (Edell, 1998; Foster et al., 1994; Pakenham, 1998).
Obtaining HIV-related information motivated many participants to attend a support group. They mentioned wanting to learn more about HIV and obtain HIV-related information as
primary reasons for attending. Comments made included, “To learn more about my disease and
the medications,” “education,” and “advice.” Information is a major component in many illness-
related support groups (Shaw, McTavish, Hawkins, Gustafson, & Pingree, 2000). HIV+ women
have reported that they also want education and information on a variety of topics in a support
group (Morrow et al., 2001), and HIV support group participation has been perceived to be
effective in providing health information (Grady, 2001).
Therapeutic Factors
Yalom’s (1975) therapeutic factors framework was used for examining which group
dynamics were perceived as most helpful and healing by the women in this study. Universality,
existential factors, altruism, group cohesiveness, and imitative behavior and their parallel
relational healing factors have already been discussed. One therapeutic factor, instillation of
hope, is not explicitly addressed in relational theory, but emerged as the most important
therapeutic factor according to the women in this study.
The importance of hope in dealing with a serious illness has been addressed in The
Anatomy of Hope: How People Prevail in the Face of Illness. Groopman (2003) writes “Hope 89
gives us the courage to confront our circumstances and the capacity to surmount them…and for
all my patients, hope, true hope, has proved as important as any medication I might prescribe or
any procedure I might perform.” Recall that Ciambrone (2001) found that the most typical reaction to being diagnosed with HIV for women was hopelessness; therefore, restoring hope that their diagnosis was not a death sentence may have been highly therapeutic for the participants of the study. As the literature about hope has pointed out, an optimistic expectancy is highly correlated with successful outcomes in therapy. This trend would surely include the support group population of HIV+ women.
Women tend to join support groups with the hope of finding others similar to themselves.
Because HIV is incurable, highly stigmatized, and chronic (previously fatal) in nature, the involvement with other women living happily and successfully with the same diagnosis can be extremely hopeful. A woman might internalize the feeling that if others can live successfully with HIV, so can she. Women in this study wanted to provide hope to other HIV+ women: “This is not a death sentence. You can live a long life if you take care of yourself.” They gave each other verbal and non-verbal reassurances of hope for their futures. Hope is a critical component in making meaning of an HIV diagnosis (Coward, 1995), and helping others with HIV is one of the behaviors of long-term survivors of HIV (Barroso, 1997). Some HIV+ women have found the opportunity to be a living inspiration to others contributes to both hope and altruism. It instills hope in the women who experience it, and it feels good to the woman who, by sharing her life experiences, instills hope in others.
DiPasquale (1990) studied one group of HIV+ African-American women (N = 7) in a pre-post test study and found a decrease in hopelessness after participation in an HIV support group for 5 weeks. The author suggested that minority women seem to achieve better results 90
from participating in a support group with similar others. DiPasquale’s study lends support to the
present study’s finding of the importance of hope and universality. Meeting other HIV+ women
may in and of itself have provided hope. The mere presence of other HIV+ women may provide
reassurance and encourage optimism. Supportive relationships and positive role models could
serve as hope-inspiring interventions.
Women may also receive hope from new information they obtain in the support group
about new treatments or other options they may not have been aware of. Imparting information
through shared knowledge might empower HIV+ women with up-to-date information and
resources that may improve their quality of life and provide a sense of control over their health.
The adage that “knowledge is power” may well apply to HIV+ women attending all-female HIV
support groups as the next section describes.
Group Outcomes
The major finding of this study was that attending an HIV support group for women is
associated with changes in behavior and self-opinion in a positive way. The data reported in this
study revealed that because of participation in a support group, 65% of group members had
reduced their risk behaviors, 48% had become more regular in taking their medication, and 67%
felt less ashamed about having HIV. These findings are meaningful because the purpose of support groups is not behavioral change, but emotional and informational support. The reader
will recall that the reason women gave for attending their support group was for emotional, social, or informational support, not behavioral change. The discovery that participation in a support group may reduce at-risk behavior and improve a group member’s medical compliance and self-opinion is serendipitous; individuals may go to a support group for support and come away with more healthful behavior. 91
It is significant that HIV+ women in this study were taking better care of themselves
physically and emotionally, and had decreased their risk behavior for re-exposure because it
suggests that HIV support groups can not only benefit the health and well-being of the HIV+
group member but also help prevent the spread of HIV. Modifying risky behavior as a result of
attending community support groups was also found by Greenberg and Johnson (1996); positive
change in risk behavior related to attendance at an HIV support group for drug addicts suggests
that HIV support groups are an untapped resource for HIV prevention. Even if groups do not
stress behavior or lifestyle changes, these are often by-products of support group activity. In a
study of support groups for people facing serious disease, 92% of group members said they
learned a new behavior, and more than half said they discovered new capabilities and became
more attentive to their own interests and needs. The process of relating to others and sharing life
experiences seems to be fundamentally healing and empowering (Trojan, 1989). Chung and
Magraw (1992) found that HIV+ female group members changed sexual and drug-taking
behaviors as a result of group attendance, although that was not the goal of the group. In
harmony with Chung and Magraw, this present study found that HIV+ women improved their
health-related behaviors though that improvement was not a reason women gave for attending
group.
The finding that over 67% of the sample experienced a positive change in their self-
concept is a noteworthy finding of this study. Many women spoke of a decrease in their feelings
of shame: “I have changed my way of thinking” and “I feel better about myself.” Increasing one’s self-opinion and self-esteem is a powerful benefit these women experienced as a result of support group participation. Ribble (1989) articulated how encouragement and information from group members can affect a woman’s choices for the better and improve her feelings about 92
herself. One woman, in learning more about HIV and understanding herself as a result of
attending her support group, found that “I can handle problems better.” This evidence reinforces
the findings of this study that suggest how group attendance may improve a woman’s self-care
behaviors and her self-esteem.
Compliance with HIV medications is associated with having higher levels of emotional
support (Cox, 2002). Emotional support from group participation may have contributed to this
study’s excellent discovery that members had improved their medication compliance. Support
groups provide emotional support which, although not intentional, may influence medication
compliance. In a ten-session group for cognitive-behavioral stress management intervention,
low-income multi-ethnic HIV+ women who reported low medication adherence (< 80% adherent
over the last seven days) at baseline showed an increase in adherence at post-intervention (Jones
et al., 2003). It was concluded that social support is a factor in predicting medication compliance.
Another considerable outcome of group membership was the network of friends that
became available for socializing. Over 70% of this study’s participants socialized outside of
group with the women they had met in the support group. This finding suggests that support groups are a potential source of a ready-made social network. Socializing outside of the group may improve group attendance, cohesion, and bonding, thus increasing satisfaction with group.
Social activities with peers may be a way for HIV+ women to focus on living life, reducing stress, and coping positively with their diagnosis, possibly improving their perceived heath and increasing their social support network. Feeling hopeful and empowered in a support group may be a reason women want to continue spending time with the other members outside their groups.
HIV+ women may be interested in participating in recreational activities with peers because they feel comfortable with them (Peterson, 2003). HIV+ women in treatment for addiction may 93
socialize with support group members as part of their new lifestyle changes. These social
relationships may have a positive effect on health and mortality (Berkman, 2000; Pakenham,
Dadds, & Terry, 1994; Walker, 2002).
The participants in this study reported improved relational skills; they found themselves becoming “more sociable,” “outgoing,” and able to “bond with women.” 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 (DeMarco et al., 1998; Morrow et al., 2001).
Relational theory has acknowledged that a desire for more connection is an outcome of mutually
empathetic relationships (Miller & Stiver, 1997).
Unexpectedly, this study discovered that support group attendance had resulted in
positive changes that participants had made cognitively, emotionally, and behaviorally. Women
stated they had become better mothers, become more educated, felt less ashamed, and taken
better care of themselves. The support and information that participants received from attending
an all-female HIV support group appears to improve one’s self-care behavior. Other studies have found this tendency as well (Chung & Magraw, 1992; Greenberg et al., 1996; Ribble, 1989). One woman summed up her new attitude in this way: “I love myself more and I love life.” These changes are extra benefits over and above the original reasons many women gave for joining group: “To meet other HIV+ women.”
Satisfaction with Group
Support groups for HIV+ women are successful when success is defined as satisfaction of the members with their support group experience. The women in this study were overwhelmingly (87%) satisfied with their group experiences as evidenced by both their quantitative and qualitative reports. Indication from other studies corroborates satisfaction with 94
HIV support groups (Kalichman, Sikkema, & Somlai, 1996), which may be due in part to the
homogeneity of the members and the nature of a stigmatizing illness that draws them together.
The participants in this study were satisfied with accomplishing the goals they stated for
attending the group: finding support and help with coping, meeting and interacting with other
HIV+ women, and getting HIV-related information. Many participants were very pleased with their support group experience and recommended them for all HIV+ women as a place they can
be themselves, find hope, respect, and friendship.
Comments showed that participants encouraged other HIV+ women to attend women’s
HIV support groups: “I would like there to be more support groups for women who are HIV+ and more advertisement about them.” By advocating for women’s HIV support groups and encouraging other HIV+ women to attend support groups, the participants attested to the fact that
they found their support group experiences to be helpful. In fact, the importance of promoting
all-women’s HIV support groups had been emphasized in other articles (Emlet et al., 2002).
Similar to this study’s findings, Peterson (2003) found that attending HIV support groups were
strongly recommended by respondents based on their own experiences of attending.
There were some unique aspects of the support group experience that participants
particularly enjoyed. They were fond of being with the other women in the group. “Talking and
getting to know others,” “making friends,” and “the women” they knew and had relationships
with made the group important to them. Gender homogeneous HIV support groups facilitate self-
disclosure and cohesiveness (Siebert & Dorfman, 1995). Having an all-female support group
membership was important for this study’s participants. HIV+ women in this study formed
attachments to their co-members that made them want to continue and enjoyed continuing their 95 attendance at their support group. Yalom (1975) has pointed out that “group members derive satisfaction from their relationship with other group members” (p. 241).
The nonjudgmental acceptance and positive environment was cited by many women as a characteristic of their group that kept them coming back. The positive environment comprised the other group members and the facilitator. One woman stated, “People accept me just the way I am.” The group culture of intimacy, acceptance, and confidentiality has also been confirmed by
Yalom (1995) as important in producing member satisfaction.
Many of the participants appreciated that they could “talk about anything” and “share openly sensitive issues” in their support group. The ability to talk about sensitive issues may be a result of the homogeneity of gender (Siebert & Dorfman, 1995). Horne (1999) determined that members of all-female groups engage in more self-disclosure about personal feelings and discussion of taboo topics than members of mixed-gender groups.
“I like this support group because it is for women only and you can let your guard down and be yourself,” said one participant. To reveal oneself and be accepted and supported is deeply confirming (Yalom, 1995). The climate or atmosphere of a support group needs to promote acceptance, safety, and goodwill. There was an atmosphere of camaraderie indicated by participants in this study that is typical of support groups in general and agrees with the comments group members in this study made about what they liked about their support groups
(i.e., feeling safe, feeling comfortable about sharing). High group cohesiveness and engagement in the support group provide the safety needed to establish intimacy and create attachments
(Oygard, 2001). The author of the GCQ-S has explained the engaged subscale as “the importance of the group for the members and a sense of closeness between them” (MacKenzie, 1983, p.
165), a definition similar to Yalom’s therapeutic factor of cohesion. Because the goal of support 96
groups is to provide a nonjudgmental space to meet and interact with similar others, the high
perception of group cohesiveness and engagement corroborates women’s comments about the
bond they had with one another.
There were some aspects of the group experience participants of this study did not like.
Regular attendance has been identified as important to group members’ satisfaction (Yalom,
1975). Responses to this open-ended question verified that regular stable participation was
important to this study’s participants. Yalom (1975) recommends a group size of eight to nine members with outpatient group therapy, and Gabriel (1996) suggests 10 to 12 members for AIDS support groups. This range of group members in attendance may be too optimistic for support groups with HIV+ women due to women’s roles in caregiving, the stigma associated with disclosure, or other stressors women may be facing, that prevent them from attending. In the
Morrow, Costello, and Boland (2001) focus group study of expectations women had for women’s HIV support groups, participants wanted a facilitator who would follow-up on members who had missed group sessions. They expected a group member who had been absent to contact the facilitator to explain so the other group members would not be worried about her.
Some participants felt that there was not enough time in their support groups to achieve all they wanted to accomplish or that the frequency of the meetings was inadequate: “we don’t meet enough.” Some support groups in this study met on a monthly basis, others on a every- other-week basis or weekly. Meetings generally lasted from between one to two hours.
Depending on how many members attended and how long they each had to share, some members may have felt that there was not enough time to discuss their concerns fully.
Problems with member personalities, or as Yalom (1975) calls them, “problem patients,” can be disruptive to the group as a whole. This study’s participants pointed out, “some members 97 talk too much” or “they fuss a lot.” Having a trained facilitator or assertive group members may help deal with personality difficulties in a support group, as do ground rules.
The benefits of support groups to the HIV+ women in this study were positive changes in their outlook and attitudes, the help and support they believed they could only get from other women living with HIV, the ability to express openly the way they felt, and the ability to use their experience of living with HIV to help others. The presence of benefits is validated throughout this study in the high rating of satisfaction the participants gave their group experience and the many positive statements made about their experiences. In the following section the characteristics of the participants will be described.
Demographics
Who were the participants in this study, demographically speaking? An important feature of the demographic data was the significant membership of women who were middle-aged (30-
49) and African American. Interestingly, with respect to ethnicity, the participants in this study were predominantly African American (65%). Other studies of HIV+ women have also reported predominantly African-American participants: 54% (Jones et al., 2003), 67% (Cowdery & Pesa,
2002), and 94% (Gielen et al., 2001). These statistics are important in light of the CDC’s report that 80% of the AIDS cases reported in 2000 were in African-American and Hispanic women.
The noticeable lack of Hispanic participants in the present study may be due to their help- seeking preferences (e.g., family or church), cultural and religious factors (Walker, 2002), or concerns over disclosing one’s HIV status (Simoni et al., 1995).
Also, the mean age of this sample was 38.9 (SD = 8.6), which is similar to the mean age found in other samples of HIV+ women: M = 37.5 (SD = 9.3) (Cowdery & Pesa, 2002); M = 37
(SD = 10) (Jones et al., 2003); M = 39.6 (SD = 7.2) (Simoni & Cooperman, 2000). Most of the 98
women in this study who attended the support groups were in their 30’s and 40’s. Since the
African-American community has been hardest hit, with a rising number of African-American
women being infected, the fact that African-American women and women in their 30’s and 40’s
are attending and benefiting from HIV support groups is important.
The percentage of this sample that had a high school education or less (63%) is higher
than those found in other studies: 36% (Cowdery & Pesa, 2002), and 49% (Simoni &
Cooperman, 2000). The positive side of finding the low level of formal education distinguishing
this present study’s sample is that these women are participating and benefiting from this resource. Lower levels of education are commonly associated with lower socioeconomic status and may put women at a higher risk for poverty, mental illness, and difficulty accessing healthcare. The resourcefulness of the women in the present study is inspiring.
A large majority of the participants identified as heterosexual (86%), with only 14% identifying as lesbian or bisexual. This too is similar to another study which reported that 74% of
373 women living with HIV in New York City classified themselves as exclusively heterosexual
(Simoni & Cooperman, 2000). Fifty-eight percent (58%) of the women in this study were single.
The members who were single may have had less social support than the women with husbands or in committed relationships. Even participants with a supportive family may have been attending a support group with other HIV+ women because of a desire to interact and get support from others who were similar to they in gender and diagnosis.
Women respondents in this study had been diagnosed with HIV for an average of 7.4 years, much longer than those in other samples: 3.4 years (Gielen et al., 2001) and 3 years
(Cowdery & Pesa, 2002). The women who attended support groups in this study may have had 99
qualities that have been noted in long-term survivors of HIV (i.e., ability to take care of their own psychological and physical needs), as reported by Webster (1996).
It has been alleged that HIV+ women have greater social support needs than HIV+ men
(Lichtenstein, Laska, & Clair, 2002). The women in this sample demonstrated their willingness to accept help, by attending a support group and using other support services in the community, and may confirm the social-service needs of this population. More than half of Gillman and
Newman’s (1996) sample of 67 HIV+ women reported some use of social-services (e.g., social
work case management, support groups, drug treatment). Thirty-eight percent (38%) of Stein and
Hanna’s (1997) sample of 167 HIV+ women had seen a mental health counselor and 13% had
attended a support group. Previous research has found that over 50% of HIV+ men and women
attending an outpatient clinic requested professional support services (Saunders & Burgoyne,
2001).
Predominantly, this study’s participants perceived their physical health to be very good.
This is an excellent finding since women generally take on the role of caregiver. An additional
household member living with HIV may have added to the participant’s stress level and
caregiving duties. Women’s traditional role as caregivers for families and children often take
time and energy away from self-care (Bunting et al., 1999; Katz, 1997; Sowell, Moneyham, &
Aranda-Naranjo, 1999; Walker, 2002). The foregoing demographic characteristics of the
participants in this study may have significant implications for future components of planning
social support services for HIV+ women.
Limitations of the Study
There were several limitations of this study. First, the sample may not have been
representative of all HIV+ women who attend support groups. As well participation was 100 voluntary; therefore women may have self-selected to complete the questionnaire. This limitation reduces the ability to generalize findings beyond the sample.
Second, there were several limitations of the study due to the development and use of a self-report measurement tool. Little validity and reliability data on the instrument was developed.
However, the instrument was reviewed by content experts, pilot tested by this researcher suggesting that it would be useful and appropriate for application with this sample. As well, some concurrent validity data on the instrument was generated by examining the pattern of correlations with the three subscales of the GCQ. It may be that better validity data would have been obtained had the sample size been larger. Further, any time a self-report instrument is used one has to be concerned with measurement bias. However, this study was particularly interested in the group member’s perceptions of the group, thus a decision was made that a self-report measure was appropriate. Clearly, the further development of the instrument is an area for future study.
Third, the study design used in this study was a cross-sectional descriptive one that collected data at a single point in time, thus limiting the ability to understand any changes in experiences of these women over time.
Recommendations for Social Work Practice
The results of this study affirm that support groups for HIV+ women have many benefits to offer group members. Social work is the quintessential profession to advocate for and to facilitate support groups for HIV+ women and other women with chronic illnesses. Because of its values and mission, social workers should advocate for doing a local needs assessment to learn if there is a need in the community for an all-female HIV support group. There are more methods of advocacy; It could be locating a current all-female HIV support group and making 101
appropriate referrals to it, advertising it within the agency, and speaking about it in a positive way to clients, colleagues, and the community. Social workers and other domains of practice may volunteer to facilitate or co-facilitate an all-female HIV support group in accordance with
the social work value of service.
A social worker, by linking an HIV+ woman to an all-female HIV support group, may be
providing her a network of potential friends, the hope of seeing other HIV+ women living
successfully, the chance to be around others who may make her feel normal, the opportunity to
give and receive support and empathy, and a catalyst for self-care. Social workers should
therefore be aware of support groups that are available in their areas and know how to access
them. Informational material identifying support groups for HIV+ women or a support group list
that includes a HIV+ women’s support group should be available to give to appropriate women.
There is also the need for doctors and other healthcare providers to know about and refer HIV+
women to support groups. These people may be the most important gateway a woman has to
knowing about support services (Peterson, 2003).
Groups need both innovative and tested ways to attract and recruit new members to the
group. Research on self-help groups indicates a strong connection between professional and
organizational involvement and group success and survival (Wituk, Shepherd, Warren, &
Meissen, 2002). Doctors and nurses serving HIV+ women in private practice settings should
know about support groups and be encouraged to provide handouts, flyers, and contact
information to patients interested in a support group. Other obvious networks for new referrals
are local AIDS service organizations, hospital and clinic social workers, health departments, and
any site that provides HIV testing for women. Also, informing the public about groups through 102
newspapers, TV, and radio are other forms of outreach that might let potential members know
about available support groups.
The importance attached to hope, altruism, and universality by members of HIV support
groups for women suggests that social workers and group facilitators must attend to these
factors. Let established members know that their supportive presence gives hope to new
members by seeing other HIV+ women living happily and healthily. The social worker may ask
group members to share their life stories and experiences with each other, especially stories that
emphasize the progress they have made since coming to the support group. The social worker
can remind the group that the purpose of a support group is to help one another and that they can
do so by sharing their experiences and creating an atmosphere where women are valued because
of these life experiences. The social worker can draw attention to similarities among members to
foster universality.
Furthermore, the planning of support groups for HIV+ women should be done collaboratively with potential members (Morrow et al., 2001). Such planning would take into account their needs for transportation and childcare, location of meeting, and best time and day
to meet. HIV support groups must be tailored to the needs and preferences of HIV+ women in
that immediate environment.
The facilitator of these groups has a very important and special role to play. The success
of the group is influenced by the dedication of the facilitator to the group and her belief in the
support group method. The facilitator may be the first contact a potential member has with the
group and she sets the stage for a safe “holding environment” (Winnicott, 1957). Ideally, the
facilitator, whether paid or volunteer, would agree to facilitate the group long-term and, as a
result, provide an example of committment for group members to imitate. In the experience of 103
this researcher, the support group facilitator’s dependability, dedication to the group, and consistent presence is therapeutic for all group members.
Recommendations for Future Research
This study has opened several avenues for future research. First, research should continue to evaluate support groups for HIV+ women because members may change over time and the benefits of support group membership may vary over time. The different lengths of time a woman has been HIV+ may affect which therapeutic factors she views as most important.
Second, a replication of this study with a larger sample would help to provide strength to these findings as well as further explore benefits of participation in support groups for this population.
Third, a comparison study examining mixed gender support groups with those having an all- female format might provide data that more clearly articulates the benefits of homogeneous gender composition. Lastly, the development of a manual for training facilitators for women’s
HIV support groups may be helpful in the formation of new women’s HIV support groups or in strengthening current women’s HIV support groups. Each of these areas of future research provides possibilities for increasing the knowledge base of social work practice.
Conclusion
HIV/AIDS continues to be a major health problem for women. From the literature review regarding support groups for HIV+ women (primarily non-experimental studies and anecdotal cases) and the results from this present study the following similarities emerge: (a) HIV+ women feel isolated, (b) they fear losing important relationships if they disclose their HIV status, and (c) they want to meet and interact with other HIV+ women. Support groups that have been successful tended to use a mutual help approach, providing a safe and confidential environment, empowering women to value themselves and make small steps to better their lives both 104 physically and emotionally. Where this study goes beyond the previous research and adds to the base of knowledge about women’s HIV support groups is in the systematic collection of data specifically from the perspective of the women attending support groups in three states. This study has methodically identified (a) reasons for attending; (b) the importance of hope, altruism, and universality in the group’s process; (c) the unanticipated outcome benefits of attendance; and
(d) the desire and ability for HIV+ women to help each other. The findings of this study justify the use of support groups for HIV+ women as a way of decreasing isolation, increasing hope, improving self-esteem and self-care behaviors, and creating mutually empathetic relationships.
Support groups for HIV+ women may be understood as an enclave of hope. One HIV+ women summed up her sentiments about her HIV support group in the following way: “I have found a second home where people understand me.” To have a feeling of being at home, the feeling of being loved, connected, and validated, is extremely comforting and empowering.
Being given the opportunity to meet together in all-female HIV support groups allows HIV+ women to support and empathize with each other. These support groups may prove to be the single most important intervention for HIV+ women.
105
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APPENDIX A
QUESTIONNAIRE FOR HIV+ WOMEN ATTENDING
SUPPORT GROUPS 124
Questionnaire for HIV+ Women Attending Support Groups
Please answer the following questions or statements as they apply to your experience in this group by circling, check-marking, or filling in your answers.
1) Describe your original reason for attending this support group.
2) What is your current reason for attending?
3) I am satisfied with my progress toward what I want to accomplish in this group. Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree
4) I would recommend this group to other women living with HIV. Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree
5) Overall, I am very satisfied with this group. Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree
6) What do you like best about this particular support group?
7) What do you like least about this particular support group?
8) How important was finding an all female HIV support group? Very Unimportant Unimportant Neutral Important Very Important
9) Have you attended a mixed gender HIV support group? Yes No
10) Would you attend a mixed gender HIV support group if an all-female group were not available? Yes No
125
Please rate the following statements as they apply to
your experience in this group by checking the corresponding ee ee
box, using the following scale: r r g g ee ee a a r r s s
g g Strongly Strongly Di Strongly Strongly A Strongly Disagree to Strongly Agree Somewhat Di Neutral Smewhat A 11) It is encouraging to see other women who are living □ □ □ □ □ successfully with HIV. 12) Knowing that the group has helped others with problems like □ □ □ □ □ mine makes me feel hopeful for myself. 13) It is helpful to see the similarities that I have with other □ □ □ □ □ women. 14) In group I realize that my problems are not unique. □ □ □ □ □ 15) I feel like I am accepted by the group. □ □ □ □ □ 16) There is a bond among the women in the group. □ □ □ □ □ 17) I can release my feelings in group. □ □ □ □ □ 18) I share things with my group that I have never told anyone □ □ □ □ □ else. 19) Learning how to express myself in group has helped my □ □ □ □ □ relationships outside of group. 20) Getting feedback from others in group has given me a □ □ □ □ □ different perspective on how I interact with other people 21) I have learned how to access services and community □ □ □ □ □ resources I never knew existed. 22) I get good advice from my group. □ □ □ □ □ 23) I feel good when something I said helps another member. □ □ □ □ □ 24) I like to offer advice and feedback when it can be of assistance □ □ □ □ □ to someone in group. 25) I have gotten some good ideas about how to interact by doing □ □ □ □ □ the same thing someone in my group has done. 26) It helps me to see or hear how others have handled situations I □ □ □ □ □ am facing. 27) I think being a member of group has helped make me a more □ □ □ □ □ compassionate friend. 28) I help new members feel comfortable in group. □ □ □ □ □ 29) The group feels like the family I always wanted and needed. □ □ □ □ □ 30) I treat group members as family. □ □ □ □ □ 31) This group helps empower me to make a difference in my own □ □ □ □ □ life. 32) The group supports me in finding my truth. □ □ □ □ □
126
Read each statement below and answer the questions as you think of this group as a whole by checking the corresponding box, using the following scale:
Not at all to Extremely Not at all A little bit Somewhat Moderately Quite a bit Extremely
33) The members like and care about each other. □ □ □ □ □ □
34) The members try to understand why they do the things they □ □ □ □ □ □ do and try to reason things out.
35) The members avoid looking at important issues going on □ □ □ □ □ □ between themselves.
36) The members feel what is happening is important and there □ □ □ □ □ □ is a sense of participation.
37) The members depend on the group leader for direction. □ □ □ □ □ □
38) There is friction and anger between the members. □ □ □ □ □ □
39) The members are distant and withdrawn from each other. □ □ □ □ □ □
40) The members challenge and confront each other in their □ □ □ □ □ □ efforts to sort things out.
41) The members appear to do things the way they think would □ □ □ □ □ □ be acceptable to the group.
42) The members reject and distrust each other. □ □ □ □ □ □
43) The members reveal sensitive personal information or □ □ □ □ □ □ feelings.
44) The members appear tense and anxious. □ □ □ □ □ □
45) How many times have you attended this group? Less than 4 Between 4-10 Between 11-20 More than 20
46) Because of participation in this group, I feel less ashamed about having HIV. Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree
127
47) Do you socialize outside of the group with women you meet in your group? Yes No
48) If you are taking HIV medication, do you take your medication more routinely than before you attended this support group?
Yes No Does not apply
49) Have you reduced your risk behavior for re-exposure (less risky partners, fewer partners, use condoms, clean needles) since attending this support group? Yes No Does not apply
50) What, if anything, have you done differently as a result of attending this support group?
51) Age _____ (fill in)
52) Ethnicity ______(fill in)
53) Education Less than 12th grade High school diploma or GED Some college or technical training College degree
54) Relationship Status Single/no significant relationship Married Partner who lives with me Partner who lives elsewhere
55) Sexual Orientation Lesbian Heterosexual Bisexual
56) Do you have access to a computer with an Internet connection? Yes No
57) Do you receive social security disability (SSI or SSDI)? Yes No 128
Do you have children or are you parenting any children? 58) No Yes, I have ____ children. If so, how many children live with you? ______
59) Are you parenting an HIV+ child? No Yes, I have ____ HIV+ child (or children).
60) Is there another HIV+ individual living in your home besides yourself? Yes No
61) How is your physical health?
Very Poor Fair Good Very Good Excellent
62) In addition to this support group, have you received help from (check all that apply)?: Individual counseling Peer counseling Case management Self-help group (like AA, NA, Al-anon, etc) Internet support group No help
63) How many years have you been HIV+? _____ (fill in)
64) How long after you first tested positive did you join a support group? _____ (fill in)
65) Are you currently in treatment for an addiction? Yes No
66) I am looking for your opinion on HIV+ women’s support groups. Is there anything else about HIV+ women’s support groups you would be willing to share?
129
Thank you for participating! 130
APPENDIX B
QUALITATIVE RESPONSES 131
Qualitative Responses
Dissertation Qualitative Data
Q1 Describe your original reason for attending this support group.
1. To help me deal with being HIV+ 2. To be able to interact with others who are experiencing the same thing that I am going through 3. My original reason for attending this support group was to meet others who are going or have gone through some of the things I’m experiencing 4. I attend the support group because I needed support from people who are going through the same thing 5. I have AIDS and would like to share my story and my feelings so I could feel better 6. To meet other women, to get support and encouragement in our everyday lives. To show love 7. To have someone to talk to who is like me and someone to discuss problems with 8. To be stronger 9. Interest and curiosity regarding how other HIV+ women are living with the diagnosis 10. To find women who are dealing with this same disease and to know that I am not alone. To be an inspiration to others who may think they are going to die. 11. I wanted to learn about the support group 12. Getting to know others that are going through the same things I am going through 13. To learn more about my disease and the medications 14. Curiosity 15. I wanted to get together with other HIV+ women to share with each other and learn 16. There was some place to go to vent likes and dislikes about treatment of HIV+ women 17. I like meeting new friends who have gone through the same things that I have gone through with HIV 18. To meet others like myself 19. To meet people with HIV and learn 20. HIV 21. To give and get advice from my friends and professionals that also attend group 22. To meet other HIV+ women 23. To meet others with HIV and to know more about the disease 24. To be around people who are HIV+ and know where I am coming from 25. To help deal with my HIV status and see how others deal with their status 26. For HIV 27. I did not want to live. I hated myself. Why should I try to get myself together just to die? 28. To be around other women who are HIV+ 29. I live with the HIV virus 30. HIV+ 31. Health reasons related to HIV 32. To find help in living with AIDS 33. I need help and I can talk to other women here 34. To talk with women who have the same disease as I do 35. To find help in living with AIDS 36. Having AIDS 37. To help me 38. I gain a lot of information from other women and I get a chance to express my feelings 39. To learn how to deal with my behavior so I can live better 40. My original reason was because the recovery housing program required me to attend. My reasons have changed since I began the program 41. I need support from women to help me deal with my situation on a positive level and help me understand how and why 42. To become more aware of myself as a woman. I learn more about myself and know who I am 43. To receive support from women who are HIV+ like myself 132
44. Support from peers and an outlet for voicing my feelings, education 45. For moral support and friendship. This doesn’t mean we always discuss our illness, but what may be disturbing us in general 46. I need the support 47. Because I want to 48. Because I want to 49. It’s required 50. To help me deal with HIV 51. To help deal with having HIV, how to manage HIV to live longer and healthier 52. For support, mentally and physically 53. For support 54. I attend the group for the love and support. The people are great. 55. To support the support group. I have met a lot of women who give me insight on how HIV has affected their lives. 56. – 57. For the support of living with HIV 58. For support and to get away from family 59. To learn more about HIV and be around my people. Someone to lean on and talk to 60. To learn more about HIV, to express my concerns and share my experiences 61. To gather as much support as I can from other members in the group 62. To be more knowledgeable about HIV 63. To understand the issues of living with HIV 64. I am HIV+ 65. It is part of the housing program 66. I was depressed and was told I should attend 67. To get HIV information 68. It was interesting to get to know different people 69. Don’t know 70. A friend asked me to go 71. -
Q2 What is your current reason for attending?
1. My current reason for attending is to meet women with my condition and talk about different issues 2. Moral support 3. I’ve found a second home where people understand me 4. My current reason for attending is support from others. 5. I need to talk to my group so I can feel better and let my counselor know how I am feeling 6. I have not attended in a long time. I missed coming. 7. To have a piece of mind. To talk to people that have the same problems as me 8. To get strong 9. Interest and curiosity regarding how other HIV+ women are living with the diagnosis 10. To touch other women living with HIV and share my 12 year survival with them 11. To meet other HIV+ women beside myself 12. I have been under a lot of stress 13. I am HIV+ 14. Fellowship, education, and positive interaction 15. For support and socialization 16. I like all of the people I have grown to know 17. Someone to listen to me and to help someone else 18. To have support 19. I have made friends who understand what I’m going through 20. HIV 133
21. To help our members improve their life in living and coping with HIV because we have people attending now who really need support 22. It helps me 23. I’ve made friends, I continue learning, and it makes me feel good.---- already made friends 24. Support 25. To have a support system 26. To find support in dealing with HIV 27. To learn how to love myself and live a healthy life. 28. To get support for my HIV and drug addiction 29. To better understand HIV 30. To better my understanding of this disease 31. To get support and to understand my illness 32. Help with living 33. It is important to talk with other women about living with HIV 34. To get support and to understand that I am not alone 35. Help with living 36. To better understand the disease 37. For help 38. To be there for women who are just learning about their situation 39. I have learned but now I want to be taught how to keep it 40. My current reasons are that (1) we as women need support from one another, (2) women with HIV/AIDS have issues only other women can address, and (3) women with the disease of addiction also have issues only other women can address. 41. I need to continue learning more and more about my disease to stay healthy and to live productively with HIV, drug addiction, and life. To survive. 42. To find me and learn how to love me. 43. To cope with loneliness and receive feedback from others 44. Support from peers and an outlet for voicing my feelings, education 45. – 46. – 47. I came to group today 48. I came to group today 49. Friends, someone to talk to who knows what I’m going through 50. Because I like the support group 51. To get knowledge about HIV and what it does 52. For support, mentally and physically 53. For support 54. To talk to the staff about my problems 55. For the different topics discussed, the speakers (doctors, outreach personnel, meditation specialist) who give valuable information 56. – 57. Continued support in living with HIV 58. Enjoy the company of others 59. To give support as well as get support 60. It is fun 61. To learn 62. Support and friendship 63. I can relate to others 64. Men are looking out for themselves 65. I am HIV+ 66. To get out of the house 67. To meet people and be with my friends 68. I haven’t because we hardly have them anymore 69. I like the people 70. I like the people 71. - 134
Q6 What do you like best about this particular support group?
1. What I like best is that we have different kinds of discussions and speakers 2. The positive attitudes of the women 3. In this group there are various age and ethnic groups 4. The best thing is meeting new people 5. That I can talk about my feelings and what is going on with me and it won’t get out in the street 6. I like this support group because it is for women only and you can let your guard down and be yourself 7. Talking and getting to know others 8. The things we talk about in group 9. Women from all walks of life attend this group 10. The comfort level 11. Meeting other people that are living with HIV 12. I know most of the women here already 13. The speaker of my group makes me feel comfortable in that setting 14. Sisterhood 15. Talking with other HIV+ women 16. Being with women that are most like me in health 17. I feel safe with my group 18. I’m not alone in this 19. Support from friends 20. – 21. We listen to each other and are willing to help out the ones who need help 22. Making friends and learning about myself 23. People, friends 24. There is a peer advocate who has been with me since I found out my status 25. The facilitators help us deal with our personal problems 26. Everything 27. Being around people that understand and accept me just the way that I am. 28. Support from other women who are HIV+ 29. Women 30. Sharing my feelings with the other women about everything 31. Meeting women that are going through the same things I am going through. Learning more about myself. 32. I talk about everything 33. I can talk about my HIV 34. I feel accepted 35. To be around other women 36. Sharing things with other women 37. I can talk about anything 38. When I hear a newcomer share what going on with her, it takes me back to some of the things I went through 39. I’m able to express what’s going on in my life day to day 40. I know that all of the women have HIV/AIDS and can relate to any HIV issues I might have 41. No men allowed. It’s not fake. It speaks the realness from the heart of the experience, strength, and hope of how they did it. 42. It is all about women 43. You can share openly sensitive issues 44. Comfort 45. Very family-oriented, caring and bubbly 46. When you can laugh, smile, cry, but come out happy 135
47. Coming to be together 48. Coming to be together 49. I get to spend time away from home with people that I know and trust 50. I get to talk about my problems 51. If you don’t have family to depend on, you always have your support group 52. Being able to express my feelings and to try and resolve problems that I have 53. People here make you feel so good about yourself 54. The people 55. The different topics and the friendly, open-minded women 56. – 57. The people 58. I like everything 59. There is always somebody to talk to and give support when you need it 60. The women 61. Getting to know women who are in the same situation as I am 62. I learn about myself 63. That we all have the same problem 64. I like to get to know the women 65. We laugh 66. The facilitator 67. The people 68. – 69. The people 70. We have fun 71. I know the people and they are like me
Q7 What do you like least about this particular support group?
1. What I like least is the time because sometimes we have to stop talking because time is up 2. Not enough people come 3. – 4. – 5. My counselor helps me and my group 6. It needs to be larger 7. I have no problems with the group 8. – 9. So far so good 10. That it meets only once a month 11. This is my first time here 12. – 13. Having to leave 14. Nothing comes to mind 15. No resources for everyday problems 16. That more women don’t participate in this group 17. Sometimes the lady doesn’t come up all the time (transportation?) 18. Some members talk too much 19. N/A 20. – 21. When someone disagrees with something said and gets very upset instead of talking it out 22. One girl talks too much 23. – 24. There are some who won’t face the fact that they’re HIV+ 25. Some of the people who attend do not take it serious 26. Nothing 27. Confronting my feelings 136
28. That some people cannot be honest about their HIV 29. Nothing 30. Nothing 31. Nothing 32. Nothing 33. Nothing 34. Nothing 35. N/A 36. Nothing 37. N/A 38. Wish we could get more women involved 39. Not enough time 40. It’s too small 41. Not many women come to get an understanding of their selves or life with HIV 42. Sometimes it is hard for me to let things out and trust women 43. The women gossip about things they hear in the group 44. Don’t know yet 45. Need more people to participate as well as sponsors 46. Not enough food 47. None 48. None 49. No funding for extra activities 50. We don’t meet enough 51. That there’s not enough funding to help women living with HIV 52. Poor participation 53. – 54. Nothing 55. Small amount of participation 56. – 57. Nothing 58. Nothing 59. When I don’t attend 60. No comment 61. Sometimes not enough attendance 62. Not enough people come to group 63. The women should get along with each other better 64. – 65. – 66. They fuss a lot sometimes 67. Can’t get others interested to come 68. It’s more like just a food get-together 69. Wish we could have it more 70. Not many people come 71. No people come at lunch
Q50 What, if anything, have you done differently as a result of attending this support group?
1. None 2. I have changed the way I eat. I think about the other illnesses that I can prevent or minimize. I take it slow. I no longer live in the fast lane. 3. I’m not afraid to live 4. – 5. Talk to my doctor 6. I’m also involved in an exercise study for HIV+ people at UAB 7. I can talk more freely and be more cautious for myself 137
8. Being more open with myself 9. I am more sociable with group members 10. Become more accepting of people who have a different lifestyle than mine 11. – 12. Brought a friend 13. I have not had a sexual relationship 14. Moped around, felt alone 15. – 16. I like meeting new people 17. Speaking out, being outgoing, and feeling safe 18. I’ve learned more about HIV and myself. I know that I can handle problems better. 19. Not feel ashamed 20. N/A 21. I socialize with others who are HIV+ more 22. I am a better mother to my baby and less ashamed of my HIV 23. Take better care of myself 24. I’ve become more educated 25. – 26. I feel better in living with the virus 27. Learning to love and live a healthy life 28. Talking to other people about my HIV status and my addiction, even if they are HIV- 29. – 30. My lifestyle and my attitude 31. I changed my lifestyle and became a better person 32. I feel better about living with the virus 33. I am feeling better about being HIV+ 34. I accept myself as a worthy member of society 35. I feel better about living with HIV 36. Try to keep people away from me when contagious 37. I feel better about living with HIV 38. I stopped getting into relationships so fast 39. I have changed my way of thinking 40. I’m trying to learn how to bond with women 41. Not allow myself to absorb others’ situations. Not compare myself to others and get what I came for 42. I have set boundaries in my life to let a person know how far I will go, and what I will and will not do. 43. I am more sensitive to HIV women’s issues 44. Express my true feelings 45. Start watching my food and water intake 46. I don’t do drugs anymore 47. Call each other on the phone 48. Call each other on the phone 49. – 50. – 51. I stopped having unprotected sex. Never trust in just what a guy says 52. – 53. I feel better about myself 54. I am not ashamed of my condition but I don’t want others to know 55. I try to understand different situations and how they affect each individual and see what they are doing to lead as normal a life as possible 56. – 57. I talk about how I really feel. I express my inner feelings more. 58. – 59. I watch my sexual contacts and take my medicine- it’s my priority. Now I use protection 60. – 138
61. I love myself more and I love life 62. – 63. Having less sex 64. – 65. – 66. – 67. I see people and get out of the house 68. – 69. – 70. – 71. Got a part-time job
Q66 Is there anything else about HIV+ women’s support groups you would be willing to share?
1. No 2. Do more to get the women to participate in group. There are a lot of women who are HIV+ but they are apprehensive about coming to a meeting for whatever reason. 3. – 4. To know that this is not a death sentence. You can live a long life if you take care of yourself. Trust in God. 5. No 6. There are a lot of studies and clinical trials listed for HIV+ women that might be helpful financially 7. – 8. – 9. Balance between consistency and growth and progression is essential to an effective group. Women living with HIV should be given the opportunity to be empowered with information available to them. 10. – 11. – 12. – 13. We are no different from women that are not HIV+. We are still loved by others, maybe more so. We are special ladies. 14. I would like to see more grants to give women with children an incentive like some of the men’s groups I know 15. Nothing comes to mind 16. I enjoy meeting with other HIV+ women. I am very grateful to the facilitators for making it possible. 17. – 18. – 19. – 20. N/A 21. I think that it is very important that every person living with HIV see a support group 22. I like it and it helps me. 23. – 24. None 25. I think it is very important to have an all women’s support group. We all identify with each others lives and stories. We see how others cope and deal with their status. 26. I am not the only one to get HIV and I don’t have to be ashamed. 27. – 28. Where my HIV status took me further into active addiction, my daughter was born HIV+ and converted to HIV- by the grace of God. 29. With the support group sisterhood I feel free to talk about whatever is going on with me. For many years I didn’t have anyone to talk to about this. Now I feel better. I know I can live like other people. 139
30. There needs to be more women’s support groups. I would like to talk to and educate other women and high school kids about this disease 31. Educate and help other people to understand about living with HIV 32. It helps to be around women who can understand me and I can understand them 33. Love each other 34. I would like there to be more support groups for women who are HIV+ and more advertisement about them 35. Help me to live with HIV and I can help other people 36. It’s a very good group 37. Group helps me in living with HIV and help other people 38. No 39. Keep focused, express your feelings so you can get feedback. Maybe you can help others. 40. I have a great need for the HIV+ women’s support group because there are some things, such as my HIV status, I feel no one can or will openly relate with in the self-help groups (AA, NA, or CA). My family is limited in the support they can give because they can only assume how I feel. They don’t have the virus so they can’t experience the emotional pain. 41. They are supportive and honest on feedback on how they have conquered situations in life and not allowed the illness to overpower them and stay stuck in misery. Today I’m allowing me to live and be happy, not give up on me, my achievements, what I need and what from life, myself and others: respect, boundaries, prosperity. 42. Thanks for helping me to be the woman I am today! 43. It is important that women of all ethnic groups continue to empower each other around sensitive issues 44. Just starting to learn 45. My group is really small. A lot of times I’m the only one who attends. I love my director, even if it’s just me and her I’m content. 46. – 47. I like group. I have friends at group. 48. I love to come to group because they help me a lot. 49. – 50. I enjoy the support and want to keep coming 51. I would like to speak to younger females about the importance of safe sex. I could give them my testimony about how extreme and real this disease is. Ladies, take full precautions and treat your body as though it was your last day on earth. 52. Group meetings can be very beneficial if we can get more women to participate and get involved. I have become more open and can discuss my problems. Hopefully, someone can relate to my situation and benefit. Our group is working hard to get others involved. We are a family. 53. Our group is fine, just like it is. 54. It’s the best. Women need to know they are not alone. Coming to this kind of group opens up a lot of doors for them. They will feel loved instead of feeling like they are nothing. At least this is the way I feel about my group! 55. Need to drop the word support group because it represents death and what is in the past 2) Need to stand for empowerment, encourage women to get healthy, look beautiful, be career-oriented, to live! 3) Check on participants of the support group to make sure they are doing well. Teach them how to access services. 56. The staff has been very helpful to me and my family. They make me feel strong again, to help me face the world again. It’s good to know nice helpful people like them. I thank god for the people. 57. Learn to express your feelings because we are going through the same or similar problems. 58. – 59. – 60. – 61. – 62. – 63. I think if you have HIV you can help other women to deal with it 64. – 65. – 140
66. – 67. – 68. – 69. – 70. The group makes me think. The group has fun and we share things other than HIV- cooking, books, clothes 71. -