Monster Media 1994 #2/Monster Media No. 2 (Monster Media)(1994).ISO/text/focus024.zip/FOCUS024.TXT

Text File | 1994-06-17 | 56KB | 1,251 lines

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: [phone].  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.
[phone].

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.
[phone].

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.
[phone].

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.
[phone].

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
[phone]

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
[phone]

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: [phone]
(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 [phone].


AIDS Info BBS ................................................
San Francisco, CA;  [phone]

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; [phone]
(Internet address: [e-mail])

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;  [phone]
(Internet address: [e-mail].)

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;  [phone]

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;  [phone]

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, [phone].

Positively Healthy .............................................
Portland, OR;  [phone]

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.