HIV / AIDS MINISTRIES NETWORK FOCUS PAPER # 24 A NETWORK OF UNITED METHODISTS AND OTHERS WHO CARE ABOUT THE GLOBAL HIV/AIDS PANDEMIC AND THOSE WHOSE LIVES HAVE BEEN TOUCHED ----------------------------------------------------------------- HIV/AIDS MINISTRIES NETWORK FOCUS PAPERS are a publication of the Health and Welfare Ministries Program Department, General Board of Global Ministries, The United Methodist Church, Room 350, 475 Riverside Drive, New York, NY 10115. Phone: 212-870-3909. FAX: 212-749-2641. Focus Papers, unless otherwise noted, may be quoted, reproduced and distributed with credit being given to Health and Welfare Ministries Program Department and the authors. ----------------------------------------------------------------- ABOUT THIS ISSUE June 1994 Dear Network Members: This edition of the HIV/AIDS Ministries Network Focus Paper is the second of a two part series focusing on starting and maintaining support groups, with specific information related to the uniqueness of working with persons living with HIV. It continues an emphasis begun in Focus Paper #22, which focused on the issues of pastoral care with persons living with HIV/AIDS. Focus Paper #24 provides material that can help support group facilitators and/or members. James Perelli looks at AIDS from a family therapist's point of view. His article could be a discussion-starter on family-of-origin relationships for a support group meeting. "Ten Characteristics of a Healthy Group," "How to Support Someone Who Is Grieving" and "Self-care for Caregivers" could be handouts for group meetings and/or used when working with group facilitators. They could also be used periodically as a resource by the group reviewing and revising the resources according to their experiences. They are resources developed over time and are open to modification to fit the particular needs of the group. The two articles in the Family Network section explore how support groups have helped two individuals who have had family members diagnosed with HIV. Richard Cory, husband of a woman with HIV and father of a boy with AIDS, tells how he found a support group that met his needs in "Faith, Hope, and Commitment." Anne Grant, a group facilitator for Kairos House in San Francisco tells an all too familiar and frequent story of the experience of one mother who found support not only among "strangers" in a support group, but also, those who loved and cared for her son. Kairos House is a non-profit service offering non-judgmental, confidential help to parents, friends and loved ones of AIDS-affected persons, as well as support to medical, nursing and other professional caregivers. One of the most frequently requested resources within this ministry is a list of resources, books, videos, etc. about HIV/AIDS ministry. As part of the research for these last three Focus Papers, we have put together an annotated bibliography which we hope will be useful in your ministry with persons living with HIV/AIDS. If there are resources not listed that you are aware of, please let us know about them. If any of these are particularly not helpful, please let us know. CAM continues to be a major resource for those affected by HIV/AIDS, with more than 400 users. If you haven't done so, we invite you to try it by using your computer and modem to dial 1- 212-222-2135. Special thanks goes to the Reverend Dr. Nancy Carter for her work on this Focus Paper and continued work as the sysop of CAM. With kindest regards, Cathie Lyons Charles R. Carnahan Associate General Secretary Executive for HIV/AIDS Ministries ----------------------------------------------------------------- AIDS, A FAMILY THERAPIST'S POINT OF VIEW by Dr. Robert Perelli, CJM ----------------------------------------------------------------- Note: Support groups often operate much like families. The following article, which looks at HIV and family dynamics, may be a helpful resource for facilitators of HIV support groups. Reprinted from KAIROS NEWS (Spring 1994), Volume 4, Number 30. You may reproduce any part of KAIROS NEWS as long you give the newsletter and any author, the credit. ----------------------------------------------------------------- A person living with HIV/AIDS needs the acceptance and support of his or her "family," whether it is a family of origin, a family of choice, or a combination of the two. However the diagnosis of HIV/AIDS can become a family crisis and everyone involved may need help in working through that crisis. In dealing with a family crisis, traditional one-on-one therapy limits us to one person's point of view. A valuable alternative is to think "systemically" -- that is to approach the "family" as a system. Family Systems Theory is one such systematic approach. Have you ever observed someone who seemed to have unresolved emotional attachment to their family-of-origin? No matter how much they deny it or pretend to be separate from their family-of-origin, they appear to be still "stuck to" the members of their family and that "stuck togetherness" still continues to operate in the background of all their relationships. As a child that person may have been "selected" from among their siblings by virtue of some difference-- by being a member of a sexual minority, for example-- and they may become caught in an intense emotional triangle in their family of origin while other siblings are spared. The triangle is intensified when the person has a life threatening disease like AIDS. Brian' s situation is a good example. Brian, a 28-year old gay man, was given a poor prognosis by his physician and came into therapy to deal with the stresses of his illness. Since his life expectancy was rather short, one of his primary concerns was living in the present. Fortunately, Brian was quick to learn that the biggest obstacle to living in the present was not just his illness, but his function in his family of origin. That function was aggravated by the fact that he had to move back into his parents' home which he had left years before. As Brian described his family, it became more and more apparent that he was caught between a rock and a hard place. Over the years his father had become more and more distant from the family. The excuses were typical: he had to work overtime; he was tired; he lost interest in his adult children's lives. An introvert by nature, Brian's father spent more and more time by himself, reading the paper, fishing or watching sports on TV. Brian realized that his father's distancing had been going on for years. An only child, Brian's father had little facility with children and often felt jealous of the attention his children received from their mother. Brian's mother, on the other hand, became the perfect mother. She was intimately involved with all her children's lives: she ran the youth group at church, she volunteered as a den mother when her boys were in Cub Scouts; she was the president of the PTA. Every time Brian's father "solved" a family problem with distance, Brian's mother countered with closeness. Now that Brian and all his siblings were adults, Brian's father thought that he would finally be able to spend some quality time with his bride. In planning his coming retirement, he dreamed of traveling across Europe with his wife. However, Brian's mother resented her husband's distance from his children, both in the past as well as in the present. She struggled to stay very involved with her adult children despite the geographical distance that separated her from them. Then Brian became sick and moved home. The vacuum created by the "empty nest" syndrome and exacerbated by her husband's distance was soon to be filled in by Brian. It wasn't long before Brian, the youngest of three male children, was "triangled" between his mother and father. Brian is struggling to extricate himself from the triangle between his father and mother. Although Brian is forced to live at home for financial reasons, he spends a significant amount of time traveling. He sets aside a portion of his disability checks so that whenever he is feeling well enough he can seize the opportunity to visit his brother in Atlanta or his ex-lover in Washington. Another way Brian struggles to keep himself out of the triangle with his parents is the way he manages his medical care. Despite his mother's prompting, Brian is opposed to chemotherapy treatments for an AIDS-related illness and has made a decision not to pursue that course of treatment. He feels that he is opting for quality time rather than quantity time. His physician respects his decision and his sister-in- law, who has been appointed health care proxy, understands his wishes. The third way Brian is dealing with his family of origin is in the realm of spirituality. Although Brian comes from a devout Christian family and despite the fact that his brother and his sister-in-law are both ordained clergy, Brian has definite ideas about his funeral. Brian will be buried from a nondenominational church and his brother will not conduct the service. Brian wants his brother to be able to grieve his death rather than having to assume the responsibility of pastoring the family. Furthermore, as a gay person who never felt particularly valued by mainline religions, Brian feels more authentic in this decision. When it comes to the issues of travel, medical treatments, and spirituality, Brian tries very hard not to argue or debate these topics with his family. He realizes that reacting to their displeasure would only locate him back in the triangle. By the same token, silence, withdrawal or running away from the family are the kinds of reactions that stunt emotional growth. As a matter of fact, they are the kind of reactions that Brian's father still uses to manage his relationships in this family. By avoiding either extreme, Brian can accomplish a variety of goals. First, he can live his life as he wants to and, with some effort on the part of his parents (they are now in couple's therapy), do this without losing his family. Also, by changing his function in the family, he invites his parents to outgrow some of their less healthy behavior and become a functional couple. And lastly, he can preserve the emotional energy he needs to deal with his own mortality. He may very well die a happy death and thereby make it easier for his parents and siblings to grieve his loss as a family. *************** Dr. Robert J. Perelli, CJM, is a psychotherapist and founder of AIDS Family Services, a community-based agency providing psychological services to individuals and families in Buffalo, New York. Dr. Perelli serves as a consultant for AIDS Community Services, Children's Hospital, Hospice/Buffalo, and the Hemophilia Center. He has written a book and numerous articles on family issues surrounding HIV and, as a Roman Catholic priest, serves on the Interfaith AIDS Network of Western New York. -------------------------------------------------------------- TEN CHARACTERISTICS OF A HEALTHY GROUP The 10 items named below are guidelines, not rules. An effective group: 1. LARGE ENOUGH TO HAVE A VARIETY OF PERSONS with different backgrounds and viewpoints but SMALL ENOUGH FOR EVERYONE TO HAVE TIME TO SHARE (usually 5 to 15 people); 2. SHARES THE LEADERSHIP AND RESPONSIBILITY for the work of the group, even if the group has a designated leader or facilitator; 3. HAS A DEFINED PURPOSE AND ESTABLISHES GROUP GUIDELINES AND BOUNDARIES, including the creation of an atmosphere of respect and support, which is to be demonstrated toward all members of the group; 4. REGARDS ALL MEMBERS AS WHOLE PEOPLE, CREATED IN THE IMAGE OF GOD and treats people as sacred; 5. STARTS WITH A PLAN OR AN AGENDA AND A TIME FRAME BUT IS FLEXIBLE and can change the focus of discussion or the length of the meeting by consensus, if an unanticipated and important concern is raised; 6. PRACTICES DEMOCRACY, permits individuals to fully contribute to discussions and take the time needed to participate in group decision-making; 7. ENCOURAGES "QUIET" PEOPLE to talk, while realizing that verbal contributions are not the only indicator of a valuable group member; 8. SUPPORTS COMMUNICATION AND PROBLEM-SOLVING, taking appropriate steps, including having a standard process for dealing with conflict, to lessen hostility, ill-feelings, or misunderstandings that may arise among members; 9. HAS A SENSE OF HUMOR AND THE GIFT OF HEALING LAUGHTER as it celebrates life, even in the midst of serious situations; 10. TAKES TIME TO GET FEEDBACK from group members about their thoughts and feelings at different times during the meeting, including at the end of a session. * * * * * Adapted "Clues to an Effective Group," in Care Team Coordinator Resource/Supervision Manual (Dallas, TX: AIDS Interfaith Network, Inc., 1990) p. 11. Copyright 1990. Used with permission. ----------------------------------------------------------------- HOW TO SUPPORT SOMEONE WHO IS GRIEVING 1. TAKE THE INITIATIVE. Make contact even when you are not sure exactly what is needed. Grievers often have trouble knowing what they need and asking for it. 2. OFFER SOMETHING SPECIFIC. Nothing is too small to do. A pastor reports how a parishioner provided a valuable ministry by polishing the shoes of a grieving woman's children. A woman who lost a child tells how she woke up one morning to find an elderly neighbor mowing her lawn and pulling weeds. Ask questions such as: "Can I go to the grocery store for you? Do you want me to pick you up for church (or to the gym, or to a 12-step meeting, etc.)? Would you like me to bring you some of my famous (name a dish you like to make) for supper? Do you need help cleaning your house?" 3. BE HONEST. Offer to do only what you want to do and are prepared to do. Express your real feelings. If you feel helpless, admit it. 4. HELP THE GRIEVER SHARE MEMORIES. Don't avoid mentioning the name of the person who has died. Share a memory you have of the person. Gently ask the griever to talk about the loved one. 5. COMMUNICATE NON-VERBALLY TOO. A sympathetic look, a touch or embrace, or sitting with a person quietly can be healing. Be sensitive to the fact that some people are uncomfortable with touching; do not push them into accepting touch. Ask, "Would you like a hug?" 6. BEWARE OF USING SIMPLISTIC STATEMENTS that may suggest the griever repress her/his feelings or that God willed the death of the person. Examples include: "It was for the best"; "Don't cry; be strong"; "God took him/her" (this statement scares children); "Time heals." Instead encourage the griever to express her or his feelings. Ask open-ended questions about what is happening in the griever's life these days. 7. DO NOT ASSUME THAT YOU KNOW WHAT IS RIGHT FOR THE GRIEVER. Check out what the griever wants before doing something for him or her. Do not tell the griever, "You must do this" or "You have to do it this way." Ask how the griever feels, what the griever wants to do. Just because something has helped you or others, does not mean it will help this person. 8. ENCOURAGE THE GRIEVER TO PARTICIPATE IN MEANINGFUL RITUALS. Ideas vary with the individual: make meals at the same time, take daily walks with a friend, read from the Bible or devotional book every day, go to regular group gatherings, make Friday night go- to-the-movies night with a friend. One-time rituals such as planting a tree in memory of the loved one can also be healing. Rituals help to re-establish needed structure. 9. SHARE INFORMATION ABOUT APPROPRIATE SUPPORT RESOURCES. Resources can include written material,, videos, support groups, professional counselors, legal advisors, church groups. 10. RECOGNIZE THAT THE GRIEVING PROCESS TAKES DIFFERENT LENGTHS OF TIME for people, depending on their personality, their emotional attachment to the person who died, and the circumstances of the death. Do not put your own time line for grieving onto someone else. The average grieving process is two years. Some situations, such as suicide, sudden death, or catastrophic loss may take longer. Be prepared to stand by the griever as long as needed. Self-Care For Caregivers 1. ALL HELPERS ARE GRIEVERS. You may also be grieving the loss of the same person, or of one or more others in your life. Recognize your own vulnerabilities and when you may be projecting your own feelings on the griever. Do not use the griever to help your own grieving process. Though helping another may also help your grief, this is not to be your goal when you are in the helper role. 2. SET BOUNDARIES. Before you commit yourself to a griever, assess how much time you can give and what kind of support you are able to give. Promise only what you can deliver. If you need to change boundaries in process, tactfully and honestly discuss this with the griever. 3. PRIMARILY PLAY A LISTENER/FACILITATOR ROLE. Encourage the griever to take healthy steps without fostering dependency on you. If the griever senses that you want control or run her or his life, the griever may not feel free to share with you some of the most important things that are going on. 4. RECOGNIZE WHEN THE GRIEVER NEEDS PROFESSIONAL HELP beyond your training and refer the person to appropriate persons. Take discussions of suicide seriously. Make a pact with the person that she or he will not hurt herself. Firmly but gently guide the person to a professional. If the person has legal problems related to a will or the funeral, assist the person in finding appropriate help. 5. GET APPROPRIATE SUPPORT FOR YOURSELF. Talk with friends, family, therapists, support groups. Have your own support system to deal with issues that come up around your helper role and your own grieving process. --------------------------------------------------------------- U.M. FAMILY HIV/AIDS NETWORK A NETWORK OF UNITED METHODIST FAMILIES AND OTHERS WHO HAVE BEEN TOUCHED BY HIV/AIDS ----------------------------------------------------------------- Faith, Hope, and Commitment A Participant's Perspective on Support Groups By Richard B. Cory In mid-1988 my wife, Catherine, went to the Red Cross to donate blood. A year and a half earlier, she had received a transfusion after giving birth to my son, Alex. She felt obligated to give back some of what she had received. A couple of weeks later the Red Cross asked her to come into their office. That's when we found out that she was infected with HIV. A short time later, we found out that Alex was also infected, presumably as the result of breast feeding. In December 1992, Alex was diagnosed to have AIDS. In the years after Catherine and Alex were diagnosed, people invited me to attend HIV support groups many times. However, I never joined a support group until late 1993. At first, like so many others, I was afraid:  afraid to admit that my family was affected and infected.  afraid of being associated with anything to do with HIV or AIDS. Then, after talking to the facilitator or members, I found that the groups that were available in my area fell short in several areas I was looking for... faith, hope, and commitment. I have observed that many HIV support groups seem to be devoid of faith and hope. The underlying theme of the meetings is sickness and death. This characteristic, at least for me, is far from supportive. Meetings seem to drag the members deeper into hopelessness and despair, rather than lifting them up. I have a friend who went through some of these same things when trying to find an HIV support group. Her brother has AIDS. She had noted the lack of commitment among members of support groups she attended. The "support" from the group was only when the group met. Many members chose to remain nameless. Members seldom or never contacted each other outside of the meetings. So, my friend Rebecca, started a support group to fill these voids. When I first contacted Rebecca, I was not looking for a support group. I have a friend at work, Mary, who knew of my family's situation. When Mary told me that someone at her church was starting an "AIDS Ministry," I asked her to put me in touch with this person so that I could share the HIV information that I collect for others and hopefully help them too. By the time I joined Rebecca's group, they had already been meeting for several months without the official recognition of the church. After attending the group just once, I found that a very serious void had been filled. I shared my family's story and my concerns and heard similar concerns from others. Then I didn't feel as alone. I have received a lot of support from computer bulletin board systems such as the Computerized AIDS Ministry (CAM) and the AIDS Education and General Information Service (AEGIS), but these services do not provide the same kind and level of support as face-to-face human contact. Although this HIV support group was started by and for Christians, no one attempts to preach religion to the members. This is very important as many people who are not of the same faith or denomination might find this offensive. And yet, the ministry of the church is still spread. Not through preaching and words, but through actions and example which carries a much stronger message. Yes... the church can play an important role in support groups through the emotional and spiritual support they provide and spread the Christian ethic through example. Shortly after I began to attend, Rebecca and her family announced the existence of the group during Sunday services at the Presbyterian Church where they are members. As Rebecca told the story of her brother, the congregation was noticeably moved. Tears were shed, including my own. The day of her announcement was the first time I had attended church in years. I was impressed and affected by the genuine love and support that I witnessed. My son Alex also went with me. He knows that he has AIDS and has told friends and neighbors on a few occasions that he has AIDS, despite us telling him he should not. We are concerned that he may face hatred and rejection from people that do not understand AIDS. I took him with me that day because I wanted him to realize that he and his mother are not alone-- that there are other people who have HIV/AIDS and that there ARE people who truly care. Rebecca and her family and the other members of this group have touched me and affected my life in a way I didn't know was possible. I feel less alone, less cynical, more hopeful, and more at peace with my situation than I ever have since this ordeal began. I can't begin to thank these people enough for what they have unselfishly done for me. HIV/AIDS support groups are clearly an area where the church can play a pivotal role. *************** Richard B. Cory lives in Chesapeake, VA. He is an American Red Cross certified HIV/AIDS Instructor and a member of the National Association of People with AIDS (NAPWA). ---------------------------------------------------------------- A Mother's Story By Anne Grant --------------------------------------------------------------- Reprinted from Kairos News (Spring 1994), Volume 4, Number 30. You may reproduce any part of Kairos News as long you give the newsletter and any author, the credit. --------------------------------------------------------------- A mother visiting from a small town in the midwest recently attended the Family Group at KAIROS for the first time. Her story was a story I have heard many times since the group began. She had received a call that her son had been hospitalized and felt she needed to be with him. Her husband was having a difficult time dealing with his son's homosexuality let alone his AIDS diagnosis, so although she had never traveled alone, she made the trip without him. She didn't know any other person who was openly gay and she had never been to San Francisco before or met any of her son's friends. However her apprehensions were quickly dispelled. She was surprised at how quickly she was accepted by his partner and their circle of friends and she was impressed by the loving support her son was receiving from all of them. For those who were estranged from their families, she soon became "Mom." She talked about how much she had changed since she arrived. Caring for her ill son was physically and emotionally draining to be sure, but she felt honored that he was allowing her to care for him. She also felt she was learning something about herself and her relationship to her son. She spoke, as many family members have done, of feeling enriched by the experience. And while it is still difficult to accept her son's illness, she knows that she will be less afraid to talk about it with other family members and friends when she goes back to her home community. *************** Anne Grant, PhD, is a Grief Counselor and Family Group Facilitator for Kairos House in San Francisco, California. ---------------------------------------------------------- SUPPORT GROUPS: ANNOTATED BIBLIOGRAPHY Compiled by Nancy A. Carter, M.Div., Ph.D, from her own library, the resource database on CDC NAC Online bulletin board service (adapted), and Focus: A Guide to AIDS Research and Counseling (December 1993), and AIDS Book Review Journal (shortened reviews by H. Robert Malinowsky). The Centers for Disease Control and Prevention (CDC) National AIDS Clearinghouse makes available the following information as a public service only. Reproduction of CDC NAC Online materials is encouraged; however, copies may not be sold, and the CDC Clearinghouse should be cited as the source of this information. Copyright 1994, Information, Inc., Bethesda, MD. All materials in the AIDS Book Review Journal are subject to copyright by the Board of Trustees of the University of Illinois and may be reprinted or redistributed for the noncommercial purpose of scientific or education advancement granted by Sections 107 and 108 of the Copyright Revision Act of 1976. ---------------------------------------------------------------- COUNSELING, THERAPY, PASTORAL COUNSELING A TIME FOR CARING: A PASTORAL APPROACH TO PERSONS WITH AIDS. A 37-minute color video produced by the Lazarus Project in cooperation with the West Hollywood Presbyterian Church. Shares the stories of several active church members with AIDS. Includes their reflections on the kind of help they found most useful and comforting. Also includes a moving segment in the hospital as a man speaks of his faith with his pastor. Available for sale only; $23 includes postage and handling. Make checks payable to The Lazarus Project, West Hollywood Presbyterian Church, 7350 Sunset Blvd., Hollywood, CA 90046. Clinebell, Howard. BASIC TYPES OF PASTORAL CARE AND COUNSELING: RESOURCES FOR HEALING AND GROWTH. Revised and Enlarged. 1966; rpt. Nashville: Abingdon Press, 1984. 463 pp. This book is a long-time basic resource for pastoral counseling. Some key chapters in relation to support groups are, "A Holistic Liberation-Growth Model of Pastoral Care and Counseling," "Facilitating Spiritual Wholeness, "Crisis Care and Counseling," "Bereavement Care and Counseling," "Group Care and Counseling," and "Training Lay Persons for Their Caring Ministries." (N. Carter) Dane, Barbara O. and Samuel O. Miller. AIDS: INTERVENING WITH HIDDEN GRIEVERS. Westport, CT: Auburn House/ Greenwood Publishing Group, 88 Post Road West, Westport, CT 06881, 1992. 225 pp. Unfortunately little is written about the grieving process that goes on after a loved one has died. That is what this book is about. "Sadly the denial of grief goes hand-in-glove with the denial of death." The second decade of AIDS will bring more and more deaths and more and more individuals will need counseling because of their losses to AIDS.... [The book] is written for mental health professionals and anyone who counsels those who are bereaved.... "AIDS is a family problem that transcends illness and death. It is uniquely one that causes families to feel they have failed and have a skeleton in the closet." Guilt, cultural and religious values, and burnout are all topics that are covered in one or more of the chapters. This would be a highly recommended book for public, medical, and academic libraries. (H. Robert Malinowsky) HIV/AIDS MINISTRIES NETWORK, Focus Paper #22, focus on pastoral counseling; Focus Papers #23 and 24, focus on support groups. Health and Welfare Ministries Program Department General Board of Global Ministries The United Methodist Church 475 Riverside Drive, Room 350 New York, New York 10115 Hoffman, Patricia. HIV/AIDS MINISTRY: A PRACTICAL GUIDE FOR PASTORS. New York: Health and Welfare Ministries, 1993. 60 pp. The Service Center General Board of Global Ministries 7820 Reading Road, Caller No. 1800 Cincinnati, OH 45222-1800 Price: $5.95 plus postage and handling. An introduction to pastoral counseling/visitation with persons with HIV. Includes a valuable chapter, "Stories from the Epidemic," in which persons tell their own stories of how HIV has affected their lives, as persons who are HIV positive and as loved ones of those who are HIV positive. Another chapter explores "Ideas for Ministry." Also includes worship resources and an annotated bibliography. (N. Carter) Hynson, Diana and Carmen M. Gaud. TO THE POINT: CONFRONTING YOUTH ISSUES--AIDS. Nashville: Abingdon Press, 1993. This important resource offers practical ways to talk to teens and adults about AIDS in a biblical and theological context. It has materials in both English and Spanish. It also contains leader's guides for using Magic Johnson's book. Order from Cokesbury, 1-800-679-1789. Land H., ed. AIDS: A COMPLETE GUIDE TO PSYCHOSOCIAL INTERVENTIONS. Milwaukee, WI: Family Service American, Inc., 1992. 300 pp. The book is an introduction to this broad topic. Two chapters on caregivers give information on burnout, stress, and grief. A chapter on people of color and HIV is especially valuable. It focuses on Latinos, African Americans, Pacific Islanders, and Haitians. A strength of the book is its describing the many populations that are affected by HIV and how services must be tailored to each different group. Landau-Stanton, J. and Clements, C. D. AIDS, HEALTH AND MENTAL HEALTH. New York: Brunner/Mazel, 1993. 370 pp. A primary source book for health care practitioners and people providing support to HIV positive people and their loved ones. Included in the book are discussions of how to deal with delirium or dementia, a multigenerational therapeutic approach, spiritual issues, and cultural diversity. It proposes a non-judgmental and supportive approach to the individual in his or her context. Perelli, Robert J. MINISTRY TO PERSONS WITH AIDS: A FAMILY SYSTEMS APPROACH. MINNEAPOLIS: AUGSBURG-FORTRESS, 1991. 112 pp. "The focus of this book will be on the crisis of AIDS in the male homosexual community." Although this is the focus, the counseling strategies can also be used for other individuals. Perelli makes a point that the church has to have compassion for the gay male even though the Bible and Christian doctrine teach that these individuals are disordered and that being gay is immoral. By discussing such topics at the emotional stresses of AIDS, system of psychosocial stressors, family systems theory, and the applications of this theory, Perelli makes a good contribution "to improving the ministry and quality of pastoral care to people with AIDS." This should be a must-read book for all ministers, regardless of their faith. (H. Robert Malinowsky) Schaef, Dan and Christian Lyons. HOW DO WE TELL THE CHILDREN?: HELPING CHILDREN COPE WHEN SOMEONE DIES. 1986; rpt. New York: Newmarket Press, 1988. 145 pp. This book is a step-by-step guide to talking about death with children of all ages, from age two through the teen years. It gives insights into what children think and understand, how they feel, and how adults can help them cope with those feelings. It also has a 16-page crisis guide that outlines the points in the book and contains sample "scripts" to help parents talk about life situations such as terminal illness, suicide, and AIDS. A good resource for dealing one on one with children. In cities such as New York where so many children are seeing loved ones die from AIDS, some support groups for children dealing with HIV deaths exist (and also support groups for HIV positive children). These are most likely to be run by professionals. (N. Carter) Shelby, R.D. IF A PARTNER HAS AIDS: GUIDE TO CLINICAL INTERVENTION FOR RELATIONSHIPS IN CRISIS. New York: Harrington Park Press, 1992. 267 pp. The author interviewed social service providers and 32 gay men for this book. It is helpful to understand relationship issues between white gay male couples who are financially comfortable. All but three of the 32 men interviewed were white and none were suffering financially. Shelp, Earl and Ronald H. Sunderland. AIDS AND THE CHURCH: THE SECOND DECADE. Revised and Enlarged. Louisville, KY: Westminster/John Knox Press, 1992. 238 pp. The book and its original edition are probably the best-known and most basic resource on AIDS and the church. Key chapters include, "Clinical and Psychosocial Effects of HIV/AIDS," "Illness in Christian Perspective," "God and the Poor," and "HIV/AIDS Ministries." THREADS OF LOVE: A TAPESTRY OF REMEMBRANCE. A moving ten-minute video produced by Health and Welfare Ministries, GBGM, UMC, about the NAMES Project AIDS Memorial Quilt, showing the quilt and individual panels made in remembrance of persons who have died from AIDS. A good resource to open up discussion about grief over the death of loved ones from AIDS and to inspire people to make a quilt panel as a concrete means of working through grief and memorializing one who has died. Specify English or Spanish. The cost is $12.00. The video is also available from the Service Center (#1713); see address above. (N. Carter) Thompkins, Floyd Jr. BY THE POOL OF BETHESDA. Pompano Beach, FL: Genesis 1:26, 1992. 108pp. Genesis 1:26 1000 NE 26th Ave. Pompano Beach, FL 33062. Price: $6.95 This is a "unique and provocative collection of Christian reflections concerning terminal illness" with the last two chapters being "testimonies of hope and a tribute to those who have suffered from the disease of AIDS." Based on sermons given by Reverend Floyd Thompkins, Jr., this book offers spiritual comfort to all who read it. He uses his black preaching rhythm and style to come to grips with terminal illness, regardless of the cause. His main purpose for publishing this book is to show that there is a need for a Christian message that can bring hope to those who have a terminal illness such as AIDS. It would be an excellent book for any religious counselor and a must for those who think that AIDS is God's judgment. (H. Robert Malinowsky) SUPPORT GROUPS Barouh G. SUPPORT GROUPS: THE HUMAN FACE OF THE HIV/AIDS EPIDEMIC. Huntington Station, NY: Long Island Association for AIDS Care, Inc., 1992. 91 pp. Long Island Association for AIDS Care, Inc. P.O. Box 2859 Huntington Sta., NY 11746. (516) 385-2451. This manual uses personal stories from nine individuals to introduce the different types of HIV support groups conducted by the Long Island Association for AIDS Care. Guidelines on conducting the different types of support groups are included. Groups include the Human immunodeficiency virus (HIV) Forum, a 4-week introductory workshop; Persons with AIDS (PWAs); PWAs with substance-abuse problems; families, caregivers, and friends; bereaved families, caregivers, and friends; partners and spouse; bereaved partners and spouse; and facilitator. The model proposed by this book comes differs from some support group models. For example, one of the guidelines is no "cross-talk." Many support groups have gained much learning and growth from cross-talk, challenge, and disagreement done in a constructive way. Some reviewers are critical of the fact that only the 12- step model is used. BEREAVEMENT SUPPORT GROUPS: LEADERSHIP MANUAL. 4th Edition. Denver, CO: Grief Education Institute, 1992. 162 pp. Grief Education Institute 1780 S. Bellaire St., Ste. 132 Denver, CO 80222. (303) 758-6048. This manual includes activities for grief support groups. The first part of the manual gives background information and presents theories about grief from such experts as Sigmund Freud, Erich Lindemann, and Elizabeth Kubler-Ross, then looks at grief and growing. Part Two provides guidance for conducting support groups; and Part III outlines support group sessions. (Information from this manual may be useful to those who have lost a loved one AIDS.) Dietz, S. D. and J. P. Hicks. TAKE THESE BROKEN WINGS AND LEARN TO FLY: THE AIDS SUPPORT BOOK FOR PATIENTS, FAMILY, AND FRIENDS. Second Edition. Tucson, AZ: Harbinger House. 153 pp. Harbinger House 2802 N. Alvernon Way Tucson, AZ 85712. (602) 326-9595. This manual addresses the impact AIDS makes on the lives not only on those people infected by HIV, but also on their families, friends, and caregivers. After briefly providing background information on the disease, the manual stresses that PLWAs need support to cope with their illness: Support from their families, support from their friends, support from their health professionals, and support from within. It outlines the normal feelings, such as fear, rejection, and doubt, that arise from a diagnosis of AIDS, and outlines strategies for coping with these feelings. The authors urge PLWAs to seek help through counseling, support groups, and to those who feel so inclined, the church. The manual stresses that those who make positive changes in actions and attitudes, and remain involved in the lives and activities of others, will experience an improved quality of life. Dobihal, Edward Jr. and Charles William Stewart. WHEN A FRIEND IS DYING: A GUIDE TO CARING FOR THE TERMINALLY ILL AND BEREAVED. Nashville: Abingdon Press, 1984. 224 pp. I often used this book, along with a resource book I had received at a training event sponsored by Shanti San Francisco, in the early years in the AIDS crisis when our church was preparing to sponsor a bereavement support group for those who had lost loved ones to HIV. It contains basic information on death, dying, bereavement but, more important for the topic of this focus paper, chapters on "Training the Laity for a Caring Ministry: A Training Module" and "Outline of a Death and Dying Seminar." (N. Carter) Hay, Louise. THE AIDS BOOK: CREATING A POSITIVE APPROACH. Santa Monica, CA: Hay House, 1988. 276 pp. This book is based on Louise Hay's work in her weekly support group and contains real life experiences of people with AIDS. This book and other resources by Hay have been important to many people who are HIV positive, particularly white gay men. Each chapter begins with an affirmation. Affirmations are an important part of self-healing, according to the book. A chapter "Support Systems" contains a short list "How to Start a Support Group." The type of group proposed probably closest to "type 2" described in this paper, though many 12-step groups ("type 1") have incorporated Hays' ideas too. (N. Carter) Kasl, Charlotte. MANY ROADS, ONE JOURNEY: MOVING BEYOND THE 12 STEPS. New York: HarperCollins, 1992. 430 pp. Charlotte Kasl, a Quaker feminist addiction expert, confronts the mystique that has built up around 12-step programs and concepts of addiction and codependency. She gives historical information that the 12-step model was created by white upper middle class men for white upper middle class men using the structure of a Christian fundamentalist group called the Oxford Group. Though many have found 12-step groups helpful, countless others, especially women, African-Americans, and Native Americans, find that these groups' emphases on conformity, humility, and personal failings works against their needs for self-affirmation and community support in overcoming issues of child abuse, sexism, racism, poverty, and homophobia. Kasl is eclectic and not everything "holds together" in this book but I think it is an important book. For the purposes of this AIDS Focus Paper, see especially "Healthy Groups, Dysfunctional Groups: How to Know the Difference" and "We Gather Together: Finding or Forming a Group That Fits." (N. Carter) Kirkpatrick, Bill. AIDS: SHARING THE PAIN. Cleveland: Pilgrim Press, 1990. Pilgrim Press 700 Prospect Ave. Cleveland, OH 44115 216-736-3700 Price: $9.95 plus $2.50 shipping. Contains practical guidelines especially helpful for clergy and lay caregivers. Pohl, Mel, Deniston Kay, and Doug Toft. THE CAREGIVER'S JOURNEY: WHEN YOU LOVE SOMEONE WITH AIDS. San Francisco: Harper/Collins, 1991. A Hazelden Book. Order from Harper/Collins or Hazelden, Pleasant Valley Rd., Box 176, Center City, MN 55012. Phone: 1- 800-328-9000. The cost is $10.00 plus $3.50 for orders up to $25.00. Addressing the special needs of caregivers, this book helps friends, family members, and health care professionals work through their feelings, develop tools for acceptance, and understand the common stages in caring for those who are HIV positive. Written from a 12-step perspective. Qwackenbush M., J.D. Benson, and J. Rinaldi. RISK AND RECOVERY: AIDS, HIV AND ALCOHOL. San Francisco: UCSF AIDS Health Project, 1992. 242 pp. A comprehensive guide for addressing HIV-related concerns in alcohol treatment settings using the 12-step tradition as a basis. The book avoids technical language, making it readable. Williams, Cecil. NO HIDING PLACE: EMPOWERMENT AND RECOVERY FOR OUR TROUBLED COMMUNITIES. San Francisco: HarperSanFrancisco, 1990. 228 pp. This book describes the support groups model used by Glide Memorial United Methodist Church in San Francisco. It critiques the 12-step model. Williams says: "When people declared that the Twelve Steps were the only way to become drug-free, it sent a message to blacks: There is nothing missing from the Twelve Steps; something must be wrong with you.... "The Twelve Steps focus on individual recovery, as if independently getting clean and sober were the ultimate goal. But African Americans are a communal people--we fight for our freedom together.... These programs teach people to get clean and sober and to go back out into mainstream society. Well, the only society many of our folks needing recovery know is the drug mix--they've never been in mainstream.... As long as blacks, women, and poor people remain anonymous, they remain invisible and unheard.... To us, anonymity feels like a place to hide. We believe there is no hiding place in recovery. We must open up and stand together" (pp. 8-9). (N. Carter). YOU ARE NOT ALONE: NATIONAL LESBIAN, GAY AND BISEXUAL YOUTH ORGANIZATION DIRECTORY. New York, NY: Hetrick-Martin Institute, 1993. 59 pp. Medical Writing and Clinical Data Services, Incorporated 50A Commercial St. Provincetown, MA 02657. (508) 487-4099. This directory aims to furnish youth-serving professionals and young people with a list of organizations that provide counseling, emergency services, shelter, medical care, support groups, social events, and other services to young people who are lesbian, gay, bisexual, or who are exploring their sexual orientation. ORGANIZATIONS/NEWSLETTERS The organizations and resources listed below can assist a support group. AIDS DAILY SUMMARIES are summaries of articles about HIV in key newspapers and journal. These are posted each business day on the Centers for Disease Control's National AIDS Clearinghouse BBS and downloaded by HIV/AIDS BBSs around the country. Current and back issues are posted on CAM BBS (212-222-2135) in the DAILY (current) and AIDSNEWS (archive) libraries. AIDS NATIONAL INTERFAITH NETWORK (ANIN) 300 I Street, NW, Suite 400 Washington, DC 20002 (202) 546-0807 Members of ANIN "believe that God reaches out to all who are affected by disease. We work to assure that everyone affected by AIDS receives compassionate respect, care, and assistance. We oppose threats to civil liberties, violations of confidentiality and all forms of prejudice and discrimination which contribute to the social epidemic surrounding AIDS. We educate people to respond to AIDS humanely and effectively. We call on everyone to address the AIDS crisis and the economic, racial, and sexual inequities which contribute to it." AIDS MEMORIAL QUILT The NAMES Project 2362 Market Street San Francisco, CA 94114-9926 (415) 863-5511 Making a quilt panel and visiting the quilt or portions of it are ways individuals and groups can work through their grieving process. Contact the project for information about the size of a quilt panel and other requirements and for showings of the quilt. AIDS TREATMENT NEWS, published twice a month by John James, reports on experimental and standard treatments. The staff interview physicians, scientists, other health professionals, and persons with AIDS or HIV; they also collect information from meetings and conferences, medical journals, and computer databases. The newsletter is available free in an online edition in the UPDATE library of CAM BBS (212-222-2135). For subscription information: Call 800-TREAT-1-2 or 415-255-0588. BODY POSITIVE 2095 Broadway Suite 306 New York, NY 10023 Contribution: $35.00 a year BODY POSITIVE MAGAZINE is published monthly by Body Positive, an organization of and for people who are HIV positive. The newsletter contains a variety of articles, news, interviews, personal stories, poems, information about support groups, and treatment information written mostly by persons who are HIV positive. Some people may find some of the language offensive. The magazine also has a free shorter "online version" that can be downloaded from the NEWSLET library of CAM BBS (212-222-2135) and other HIV BBSs. CENTERS FOR DISEASE CONTROL NATIONAL AIDS HOTLINE 1-800-342-2437 (English) 1-800-344-7432 (Spanish) 1-800-243-7889 (Hearing-impaired and deaf) Contact this hotline for AIDS information, particularly factual, statistical, resources, and prevention information. FOCUS UCSF AIDS Health Project Box 0884 San Francisco, CA 94143-0884 FOCUS: A GUIDE TO AIDS RESEARCH AND COUNSELING is a monthly publication of the AIDS Health Project, affiliated with the University of California, San Francisco. Twelve issues of Focus are $36 for U.S. residents, $24 for those with limited incomes, $90 for U.S. institutions. Make checks payable to UC Regents. KAIROS HOUSE 114 Douglass Street San Francisco, CA 94114 415-861-0877 KAIROS NEWS is published quarterly to provide information, inspiration, recognition and support to those who care for persons affected by HIV and other life-threatening illnesses; and to maintain contact with contributors and supporters of KAIROS Support for Caregivers. To receive Kairos News, call 415- 861-0877. Kairos News also has an "online edition" and may be downloaded from the NEWSLET library of CAM BBS (212-222-2135). Kairos House is a non-profit service, offering non-judgmental, confidential help to parents, friends and lovers of AIDS-affected persons, as well as support to medical, nursing and other professional caregivers. NAPWA 1413 K Street, NW Washington DC 20005 Phone: 202-898-0414 (FAX) 202-898-0435 Medical Alert is published by NAPWA--the National Association of People with AIDS six times a year. It is a treatment-oriented magazine. Medical Alert has a free online edition that can be downloaded from the UPDATE library of CAM BBS (212-222-2135). NATIONAL AIDS INFORMATION CLEARINGHOUSE P.O. Box 6003 Rockville, MD 20850 1-800-458-5231 The clearinghouse has or can refer you to printed and audiovisual resources in a variety of languages. TREATMENT UPDATE is a newsletter focusing on HIV treatment published by Gay Men's Health Crisis (GMHC). Treatment Update has a free online edition that can be downloaded from the UPDATE library of CAM BBS (212-222-2135). AIDS-RELATED ELECTRONIC BULLETIN BOARDS (BBSs) This material is excerpted from a document prepared by the CDC National AIDS Clearinghouse. Inclusion of a service does not imply endorsement by the Centers for Disease Control and Prevention, the CDC Clearinghouse, or any other organization. Electronic bulletin board systems, often called BBSs or bulletin boards, are computerized information services that are accessed by using a computer, modem, and telephone line. Unless otherwise stated, services are free. The phone number listed can be dialed with a modem. AEGIS BBSs provide access to national and international forums. Messages posted on these forums are "echoed" on networks linking BBSs throughout the country. CAM--Computerized AIDS Ministries............................. New York City, (212-222-2135, 2 lines) CAM is a free BBS for persons concerned about HIV information and support sponsored by Health and Welfare Ministries, General Board of Global Ministries, The United Methodist Church. It has public forums where people can converse with others on HIV-related concerns, private electronic mail (E-mail) and a library of files. (See references to some of these files in the annotated bibliography for Focus Paper 24.) CAM has two numbers 212-222- 2135 and 800-542-5921. Those who can afford to do so are encouraged to call the 212 number. The 800 number has only one line and is often busy. Users are limited to 10-30 minutes a day. There is a waiting period before new users have full access. CDC NAC ONLINE................................................. CDC NAC ONLINE is the computerized information network of the CDC National AIDS Clearinghouse and gives non-profit AIDS-related organizations direct computerized access to the CDC Clearinghouse and its information and bulletin board services. It contains the latest news and announcements about many critical AIDS- and HIV-related issues. The system also features electronic mail and interactive bulletin board forums, and is the original source of the AIDS Daily Summary newsclipping service. CDC NAC ONLINE is a free service and can be accessed by dialing a toll-free number. Users must first obtain a username and password. For a registration form or more information, call the CDC Clearinghouse at (800) 458-5231. AIDS Info BBS ................................................ San Francisco, CA; (415) 626-1246 AIDS Info BBS is a long-established comprehensive electronic bulletin board targeted primarily to HIV-positive individuals, persons with AIDS, and others concerned about HIV infection. It contains hundreds of articles including AIDS Treatment News, electronic mail, and an open forum. Anyone can access AIDS Info BBS free. For more information, contact Ben Gardiner, AIDS Info BBS, P.O. Box 1528, San Francisco, CA 94101. Black Bag BBS ................................................ Collegeville, PA; (610) 454-7396 (Internet address: ed@blackbag.com) Black Bag BBS, a member of the AEGIS network, is an electronic bulletin board containing information about many medical topics including HIV/AIDS. The Black Bag Medical BBS List is a comprehensive list of medical-related electronic bulletin boards in the United States and abroad. Black Bag BBS also includes AIDS Treatment News, AIDS statistics, and the FidoNet echo of the AIDS National Discussion. Donations are encouraged, but anyone can access Black Bag BBS free of charge. For more information, contact Edward Del Grosso, MD, P.O. Box 632, Collegeville, PA 19426. HIV/AIDS Information BBS .................................. San Juan Capistrano, CA; (714) 248-2836 (Internet address: mary.elizabeth@aegis.hivnet.org.) HIV/AIDS Information BBS is the hub of the AIDS Education and General Information System (AEGIS), a growing network of HIV-related electronic bulletin boards. It includes many newsletters and hundreds of files that can be downloaded. It also echoes other networks including FidoNet and the international HIV-NET conferences. Anyone can access HIV/AIDS Information BBS free at connections up to 9600 baud. For more information, contact Sister Mary Elizabeth, Sisters of St. Elizabeth of Hungary, P.O. Box 184, San Juan Capistrano, CA 92693-0184. HNS HIV-NET .................................................. Tollfree; (800) 788-4118 HNS HIV-NET is an electronic bulletin board for physicians and other health-care professionals treating HIV-positive patients and those with AIDS. It contains hundreds of files of newsletter articles, bibliographies, and graphics files of pictures of opportunistic infections. There are also a number of different forums, corresponding to different health-care professions. Interested users should dial the data line to register. After being validated or registered by the sysop (or "systems operator"), they can call back. For more information, contact John Owens, MD, HNS HIV-NET BBS, 9037 Kirby Drive, Houston, TX 77054. NAPWA-Link .................................................. Washington, DC; (703) 998-3144 NAPWA-Link is the electronic bulletin board of the National Association of People With AIDS. NAPWA-Link contains electronic mail, announcements, and databases of news articles, drug interactions, and organizations. Anyone can connect for online information about NAPWA, NAPWA-Link, and HIV/AIDS, by logging on as a visitor. For more information, contact the National Association of People with AIDS, P.O. Box 34056, Washington, DC 20043, (202) 898-0414. Positively Healthy ............................................. Portland, OR; (503) 243-2557 Positively Healthy is a community BBS, by, for and about people living with HIV. The focus of the board is becoming and remaining healthy while living with HIV. There are message areas for sharing experiences and downloadable files about treatment, alternative therapies, nutrition, and news.