by Nancy A. Carter
The silence of churches, synagogues, and mosques across the nation --the refusal to listen with love--serves to push aside people with HIV/AIDS. The church, and that means all people, must stop pushing away our brother and sisters with AIDS; we must stop trying to put them out of our lives and out of our families. The church is supposed to bring people together, not to leave them out in the cold. The church is to be a place of healing. -- The Rev. Cecil Williams, Glide Memorial United Methodist Church, San Francisco, CA 1
Support groups help meet the needs of persons living with HIV/AIDS, their loved ones and caregivers. Caregivers include a variety of people--loved ones of persons living with AIDS (PLWAs), buddies, health care professionals, and facilitators of support groups. Support groups can:
- provide people with HIV a relaxed and informal place to share their experiences and build new friendships; help caregivers to renew their faith and confidence in the face of devastating losses;
- give couples (at least one of whom is HIV positive) an opportunity to discuss relational, legal, health, and other issues that concern them;
- provide specific groups of people--such as women, persons over 50, teenagers, African-Americans, Spanish- speaking people--a support group of their peers to discuss their experience of HIV in their lives.
Support groups are especially important to persons who are HIV positive. So many emotions confront people after they have been diagnosed. As they face changing social supports and financial situations, they can become frightened, bewildered, and worried. When others reject them and treat them inappropriately, they can become depressed, angry, and isolated.
In support groups, PLWAs meet others who have had similar experiences. They learn they are not alone and that they can build a new life. A participant in a support group wrote on the CAM electronic bulletin board about a group he had belonged to:
I could share with these people my deepest secrets and still be loved. I would give up an arm or leg to have a new support group. I have tried to start one but it never panned out.... When I first became sick it was the group that gave me the strength to keep going. In the group we talked about life and we also got a guest to come in and teach us nutrition, legal aspects, alternative medicine and many other programs.... It saved my life so I know how important it can be for others.
HIV support groups often become a major source of love and acceptance. Usually people gain acceptance, support, nurture, and intimacy from their birth families, close friendship groups, and/or religious groups, such as churches and synagogues. However, too often, these groups reject individuals when their HIV positive status becomes known, especially if the person contracted AIDS from IV drug use or same gender sex.
Loved ones of PLWAs can also benefit from special support groups to deal with their issues, including their feelings about caregiving, fear of contagion and infection, grief, changed social conditions, health concerns, and obsessional thoughts.
Informal caregivers... may face the same issues of anticipatory loss and grief, isolation, helplessness, and hopelessness as HIV patients.... Support groups can help caregivers meet the challenges of social isolation and lack of a support system and reduce stress, enhance coping skills, and avoid burnout. Groups enable caregivers to discuss concerns with others sharing the same experiences and emotions and to work out complex feelings of worthlessness, frustration, or alienation....2
HIV negative persons are another group that need support groups. Those who have lost friends, neighbors, and loved ones to AIDS can suffer from "survivor syndrome." Symptoms of this state are intrusive images of disaster, psychic numbing, struggles to find meaning, and guilt.3 Persons feeling this way are liable to participate in self-destructive behaviors, such as overt and covert suicide attempts. They may start to have unsafe sex. A goal of survivors' groups is therefore to keep their members HIV negative: "'We are survivors--so far--but there is the threat of becoming infected and the responsibility of remaining virus free,' said Will Johnston a participant in a HIV negative support group...."4
Four general types of support groups exist. Support groups are small groups that gather for support for dealing with a shared concern or experience and
- follow a suggested, often ritualistic, format; have established written guidelines; but use rotating facilitators.
Common examples: 12-step groups, including HIV Positive 12- step groups; some types of church groups meeting for prayer, action, and/or study.
- use rotating facilitators or no designated facilitators. They follow either a loose regular format or are "free form."
Common examples: consciousness raising groups; some types of church groups meeting for prayer, action, and/or study, such as covenant groups; social groups.
- are facilitated by trained volunteers. These groups usually have some kind of verbal or written agreement about the format of the meetings and the ground rules for the group.
Common examples: a variety of HIV-related support groups sponsored by AIDS support and other organizations; bereavement groups; church small groups; parents' groups, social action groups.
- are facilitated by trained professionals. The format and guidelines of these groups vary with the professional's style of leadership and the purpose of the group.
Common examples: HIV/AIDs support groups run by therapists, social workers, clergy; group psychotherapy, general groups and groups focusing on a certain issue such as physical abuse or recovery from addiction; support groups for trained volunteers facilitating support groups.
When established with the appropriate guidelines, support groups provide a nonjudgmental environment where people with similar experiences vent their feelings; work on their day-to-day problems; explore issues that concern them, including spiritual issues; and widen their base of friends.
This paper focuses mostly on how congregations can sponsor the third type of support group, those facilitated by trained volunteers, with some emphasis on groups led by clergy. The example of a support group that is used is for HIV-positive people.
The groups described in this paper are not therapy-oriented groups. Sometimes PLWAs need to be in therapy support groups; most often other types of groups are more appropriate. Additionally, we must take care not to convey the message that just because a person is HIV positive she or he needs psychotherapy. This approach can be especially problematic when dealing with persons from cultures that are not psychotherapy- oriented and get their support and guidance from their own peer groups and/or religious leaders, not to mention those who cannot afford psychotherapy.
There are as many ways churches can start and maintain HIV- related support groups as there are groups. First of all, your church should assess if there is a need for such a group and the type of need that exists. At this step, pay attention to who has suggested a support group--the group to be served and/or the group offering the service. Be sure those to whom the service is offered also feel the need for a support group.
Sometimes churches that want to start an HIV support group have their own "agenda," such as gaining new church members, bringing the gospel of Jesus Christ to the participants in a doctrinaire way, or helping group members to leave their "sinful lifestyle." In their book, AIDS and the Church: The Second Decade, Earl E. Shelp and Ronald H. Sunderland emphasize:
AIDS ministries are primarily ministries of support, nurture and consolation. They are not primarily evangelistic ministries in the sense of pressure to convert to a particular faith or morality. To view evangelism as the primary or sole objective of ministry to people with AIDS is to misunderstand ministry and probably will be counterproductive with the targeted audience.
..."Saving" people, it should be remembered, is God's business. Thus, the purpose of all ministry, including AIDS ministry, is to represent God's love for all humanity, without condition, and to embody and express that love in all human relationships.5
Another step is to find out if that the service is offered elsewhere. If support groups exist and no more are needed at the time, ask those groups if they have needs such as referrals, low cost space, pastoral counseling, safe religious space for PLWAs.
If you determine that people need one or more support groups, secure appropriate persons to be facilitators. If these volunteers are inexperienced with leading HIV support groups, hold a training event or send them to a training event. A local HIV support organization; a social worker, pastoral counselor, or psychotherapist experienced with working with people with HIV; and/or instructional training booklet can assist your training. Focus Paper #24 will contain an annotated bibliography of resources that can help you in training and carrying out support groups.
Always involve potential group members in the planning for the training of the facilitators and for the purpose of the group. "Ownership" of the group by its members is a vital issue. Group members should share in the leadership at every stage of planning.
Groups can be open-ended or time-limited. They should have a specific focus, such as a group for HIV positive people, a group for caregivers, or a group for women who are HIV positive and/or at risk for becoming HIV positive. Discussions can center on a variety of topics, including medical information, treatment options, common experiences, or physical, emotional, and/or spiritual support.
Set an agenda, a regular meeting time, and a convenient location. Advertise, as appropriate. Make phone and personal contacts to let people know of the group.
A support group, whether formed from a spiritual, pastoral or psycho/social perspective, must be facilitated by experienced, compassionate and competent persons. Good facilitators are, in the words of pastoral counselor Howard Clinebell, "group-centered leaders," and "midwives." He has written that "Their job is to help the group achieve an emotional climate and a level of communication, which will facilitate the growth of all group members." 6
Facilitators model an attitude of support, caring, concern, and respect for all.
Creating an atmosphere of respect and dignity and maintaining it is of utmost importance, especially for groups of HIV positive people. In other contexts, PLWAs often experience rejection and oppression because of their positive status, history of IV drug use, and/or their sexual orientation/identity, race, class, nationality, or gender. Individuals need a safe place where they can be themselves.
Facilitators set basic boundaries, making it clear that the group norm is tolerance of each individual's uniqueness. They demonstrate respectful and caring behavior by listening carefully to what each group member says and addressing each one with respect and dignity. They model asking questions and expressing disagreements in a supportive, non-threatening way.
The facilitators and group should develop group guidelines. For instance, an important ground rule is that no physical violence or threats of physical violence will be tolerated. The group may want to be a non-smoking group.
Make a group agreement that members who are not already in a sexual relationship with another group member must not enter into one during the time period the group meets. Speaking of support groups whose purpose is healing and/or recovery, feminist psychotherapist Charlotte Kasl says that, in a healthy support group:
Sexual or emotional exploitation is not accepted as part of the norm. People do not emotionally, sexually, or in any other way exploit each other. The group is not used as a place to find sexual or dating partners. (Remember groups often become one's psychological family and it is incestuous to have sex with one's brothers and sisters.) If two members become involved, one should leave. 7
This boundary is not intended to be sex-negative, but some may hear it as so. Spend time discussing it as is needed.
This boundary is intended to maximize healing and prevent abuse that happens in both heterosexual and gay/lesbian group relationships. Kasl has written extensively of the sexual abuse of women by men in Alcoholics Anonymous. Sexual exploitation is not limited to heterosexual men, or men in general. Abuse can be initiated by either gender and by persons of all sexual identities/orientation.
Boundaries will vary from group to group, according to its context and needs. Another very important concern is confidentiality. Be sure the group understands that "what is said in the room stays in the room."
Co-facilitators can be a better leadership model than a single facilitator. For example, where the group is a mixed-sex group, a male and female team can be very effective. If at least one of the facilitators is HIV positive, the group may experience this as especially affirming and encouraging. An important key, of course, is that the co-facilitators get along and work well together.
Though each group is unique, support groups tend to move through certain stages. The facilitator should know these stages and phases and be ready to guide the group.
People newly-diagnosed with HIV often say, "I don't need a support group." Sometimes this reaction covers some type of fear about joining a group. Perhaps the person has never been in a support group setting before or has had a negative experience with a small group. The person may also realize deep down that attending a group will "bring home" the reality of his or her diagnosis. Change itself--just meeting new people-- can be scary.
Most people experience coming into a support group as a threatening situation. Especially in their first few meetings of a support group, some may show a great deal of superficiality and politeness. Others may reveal fears and anxieties, such as hesitancy, aloofness, or silence.
About the second or third group meeting, confrontations and oppositions begin. For example, if a number have told stories of being rejected by others because of their HIV positive diagnosis, those who have not experienced rejection may share their experience. The facilitator must make it clear that expression of differences, disagreements, and a broad range of feelings, including anger, are all right.
Confronting differences can be especially difficult for persons with AIDS dementia, who may think a question or challenge is an assault, an attempt to do harm. For this reason, confrontation of people with AIDS dementia must be done carefully in an atmosphere of unconditional acceptance. The facilitator and group must make a special effort to create a warm, caring, safe environment for them.
If the group is truly supportive, trust evolves and deep friendships are formed. Then the "hard work" begins. Individuals freely express their anger and resentment, their fears and anxieties concerning illness and death, and also their affirmations and celebrations of life.
A support group for HIV positive persons probably will be ongoing, rather than time-limited. New group members will come (a clear process for new group members entering should be established). More "senior" group members may leave as a result of increased illness or death.
The congregation and pastor(s) can help support these groups, informing them about the availability of services, such as individual pastoral care, congregations that welcome persons with HIV and their loved ones, weekly prayer lists, and sanctuary/chapel space for healing services, memorial services, and funerals.
Deal with group transitions openly--both "arrivals" and "departures." Welcome new members and invite everyone to introduce themselves. Discuss sicknesses and deaths of members. If the group is engaging in a "conspiracy of silence" about the sickness or death of a group member, a facilitator might say, "I miss R... so much." or a similar comment to signal that it is OK to talk about sickness, death, and grief.
If group members seem ready, facilitators should encourage them to visit any member who has been hospitalized or is homebound. That members visit each other will reassure those still attending the group that they will not be forgotten when they if are unable to come. In the group, be sure to invite visitors to process their feelings about their experiences.
The tone and content of meetings will vary. In some meetings, members will focus on issues of death and dying. At others, the atmosphere will be light. Facilitators have to be intuitive and sensitive to the group's needs. Avoid pressing too hard while at the same time knowing when to give the group a little push.
Although HIV support groups must experience a lot of mourning, celebrations should also be a part of group life. Plan special events and get-togethers, particularly during the holidays. When a member returns after an illness, have a special meal to welcome him or her back.
All of us are living with AIDS. Some of us are HIV positive. Life calls for celebrations.
HIV/AIDS is difficult for all of us, whether we admit it or not. It is affecting us as individuals, a community, a nation, and a world at every aspect of our existence. HIV has forced many of us look at ourselves and the way that we, as a society, have treated not only PLWAS but all those with other illnesses, people who are elderly, and people who are physically challenged. One good result of this devastating crisis is that persons working with HIV have joined together in a common cause with people from a variety of backgrounds, races, religions, economic classes, and different sexual/gender identities.
We need to find new ways to be supportive of one another, not only when confronting HIV, but in all dimensions of our common life. As we learn to be more supportive, loving, and caring of each other, we will grow in ways God has called us to grow.
The Rev. Dr. Nancy A. Carter is a consultant for the Health and Welfare Ministries, GBGM, UMC. She is an editor/writer and the sysop (system operator) for CAM, the department's Computerized AIDS Ministries electronic information service. She has written many articles, including a number on HIV and the church, and three books, including Jesus in the Gospel of Matthew: Who Do You Say That I Am? published by the Women's Division, GBGM, UMC, in 1993.
1 Cecil Williams, No Hiding Place: Empowerment and Recovery in our Troubled Communities (San Francisco: HarperSanFrancisco, 1992), p. 216.
2 Ken Pinhero and Cathy Cassel, "Group Support for Caregivers" Focus: A Guide to AIDS Research and Counseling (01/91) Vol. 6, No. 2, p. 1. As reported in The Centers for Disease Control and Prevention (CDC) National AIDS Clearinghouse Daily Summary. Copyright 1991, Information, Inc., Bethesda, MD.
3 Rachel Schochet, "Psychosocial Issues for Seronegative Gay Men in San Francisco," Focus: A Guide to AIDS Research and Counseling (08/89) Vol. 4, No. 9, p. 3. As reported in The Centers for Disease Control and Prevention (CDC) National AIDS Clearinghouse Daily Summary. Copyright 1989, Information, Inc., Bethesda, MD.
4 Renee Graham, "The Negative Experience," BOSTON GLOBE (01/21/92), p. 51. As reported in The Centers for Disease Control and Prevention (CDC) National AIDS Clearinghouse Daily Summary. Copyright 1992, Information, Inc., Bethesda, MD.
5 Earl E. Shelp and Ronald H. Sunderland, AIDS and the Church: The Second Decade, revised edition (Louisville, KY: Westminster\John Knox Press, 1992), pp. 136-137.
6 Howard Clinebell, Basic Types of Pastoral Care and Counseling: Resources for the Ministry Of Healing and Growth, revised and enlarged (1966; Nashville: Abingdon Press, 1984), p. 356.
7 Charlotte Davis, Many Roads, One Journey: A New Understanding of Recovery, (New York: Harper Collins, 1992) p. 293.
8 Parts of "Early Stages," "Later Stages," and "Conclusion" have been adapted from "HIV/AIDS Counseling for Today and Tomorrow," chapter six on support groups, an unpublished manuscript by Mark A. Bonacci and AIDS Interfaith Network, Inc of North Texas Care Team Training Manual by Charles R. Carnahan and Robert E. Hensley, 2nd edition (Dallas: AIDS Interfaith Network, Inc., 1990). Copyright 1990. Used with permission.