A colleague writes: I am doing a presentation tomorrow to a group of individuals who are HIV+. The topic is grief over their own disease and grief over the loss of friends to the disease. I looked at your website and couldn’t find any articles on that type of loss. Do you have any suggestions of articles or links, or anything I could use as handouts for attendees? Please don’t spend a lot of time researching this. It'll be okay even if I don’t have anything to hand out. I just wondered if you have something in mind off the top of your head. Much thanks!
My response: I've listed a number of references, some of which you'll note are quite a bit older than others, but I've included them in case parts of their content might still be relevant and suitable for your purposes:
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS (1999)- "There are unique challenges and needs in the bereavement process for people coping with AIDS-related deaths. This chapter will explore the nature and process of grief and identify interventions for use by the palliative care team in helping the bereaved cope with their losses, adjust to a changed life, and be open to personal growth and transformation . . ."
Coping with a positive HIV test-HIV and AIDS (2021)- "Hearing that you have HIV can be shocking, but people with HIV can live a long and healthy life. Find out how to cope with a positive test result and where to go for support. HIV is a manageable long-term condition, but being tested early is essential to getting appropriate healthcare and treatment . . ."
HIV/AIDS - Symptoms and Causes (2020) - "Acquired immunodeficiency syndrome (AIDS) is a chronic, potentially life-threatening condition caused by the human immunodeficiency virus (HIV). By damaging your immune system, HIV interferes with your body's ability to fight infection and disease . . ."
Abstracts
AIDS-Related Grief and Coping with Loss Among HIV-Positive Men and Women (2003) - "AIDS-related grief was examined and its association with coping among HIV-positive men and women explored. AIDS-related grief, psychological distress and coping were examined among a sample of 268 HIV-infected individuals, diverse with respect to gender, ethnicity, and sexual orientation. Participants exhibited elevated scores on measures of grief reaction and psychological distress including depressive symptoms, anxiety, and traumatic stress related to their losses . . ."
Dealing with AIDS-related loss and grief in a time of treatment advances (2001) - "Recent advances in the treatment of HIV/AIDS have dramatically changed the lives of many patients and their loved ones as well as those who care for them. However, not all patients respond successfully to the latest treatments. Hospice professionals need to understand the experience of AIDS patients and their loved ones in this period of hope and disappointment, and to find appropriate ways to support and care for them. This article explores the implications of treatment advances for AIDS patients, their loved ones, and professionals in dealing with loss and grief . . ."
Disenfranchised grief arising from HIV-AIDS (2019) - "The concept of disenfranchised grief can inform our understanding of the grief that arises from death as a result of HIV-AIDS. What distinguishes disenfranchised grief from 'normal' grief is that the bereaved find themselves in a social context where they are not accorded the right to grieve. While the major focus of current research in this area is on the difficulties experienced by partners of gay decedents, less attention is paid to the grief suffered by those whose loved ones came from other social groups afflicted by HIV-AIDS, such as women, intravenous drug users and residents of parts of the world where HIV-AIDS has become endemic . . ."
Articles
25 HIV Resources You Should Know About by James Myhre (2017) - "Learning to cope with the human immunodeficiency virus (HIV) can be challenging — but you don’t have to go it alone. There are numerous nonprofit organizations that offer services, guidance, and support to help you normalize life with HIV. Here are resources where you can find a doctor, get help in paying for treatment, locate affordable housing, and discover mental health services you might need . . ."
Coping with Hidden Sorrow by Ken Doka (1992) - "Grief can become disenfranchised for many reasons. Every society has conventions about grieving – rules that define for whom, how, for what, and for how long people should grieve. In our society the “who” is generally family: spouses, parents, grandparents, children, grandchildren and siblings have recognized rights to grief. The grief of others often is not considered. We are attached to all sorts of people besides family. We can develop strong relationships with any people – fiances, friends, co-workers, neighbors, teachers and therapists, to suggest a few. And when these people die, we experience grief . . ."
Coping with grief when friends die from HIV-related issues by Positive Peers (2019) - "Losing someone you love is one of the hardest things in the world. When you’re living with HIV, their death can be even harder if it’s from HIV-related complications. Not only is it a sad time, but it can also be a scary time. What makes it so scary? It can make you start to think about your health because you have HIV too. There’s something about death that makes us very aware of our own mortality. For some people, it gives them the freedom to take charge of our lives finally, but others feel anxious about being HIV positive. Even if they thought they felt okay because of the medicine, resources, and knowledge available, it might cause some anxiety when something stressful happens . . ."
Gay Grief and Gay Widowers by Michael Shernoff (1997) - "For each gay widower it is always different, different, and complicated. With no rules and no one to rely on for advice, it's an unknown world out there for gay men whose partners have died. All too often gay widowers have no idea what they're doing. The first record of one man mourning his beloved is in The Iliad with Achilles publically lamenting the death of Patrocolus. As long as men have loved other men, they have buried their partners and struggled with how to redefine their lives in the aftermath. The most striking dynamic facing the surviving partner of a same sex relationship is that the relationship is not universally recognized, validated and valued . . ."
Gay Marriage and Gay Widowhood by Michael Shernoff (1997) - "Whatever the legal imperatives for same sex marriage or the material advantages it may deliver, it could also bring important psychological benefits to gay people who choose this route; and these benefits are nowhere more apparent than in the case of a gay man whose lover has died of AIDS. The state of marriage would help the living partner to see himself as a widower and assume such an identity as socially defined, and this in turn would make it far easier for the man to come to terms with the loss than is currently possible for most gay men who are bereaved . . ."
Gay Widowers: Grieving in Relation to Trauma and Social Supports by Michael Shernoff (1998) - "When a gay man's partner dies, his trauma is often exacerbated by the lack of mainstream culture's recognition of his relationship, his loss, and being a widower. All surviving partners regardless of sexual orientation experience certain psychosocial and intrapsychic reactions. In addition, gay men face unique stressors that complicate bereavement. This article is based on fifteen years of clinical work with gay widowers and addresses their psychosocial issues, the impact that absence of social supports has on their grief and how mental health professionals can help facilitate mourning. AIDS has brought focus to gay widowers . . ."
Helping AIDS Survivors Heal by Alan D. Wolfelt (2007) - "A friend or family member has experienced the death of someone loved from AIDS. You want to help, but are not sure how to go about it. This article will guide you in ways to turn your cares and concerns into positive actions . . ."
Social Work and HIV: Exploring Grief in the Newly Diagnosed Client by Nathaniel Currie (2019) - "One of the most important parts of social work in the HIV prevention and care setting is being available and present when a client finds out for the first time that they are HIV positive. This is a moment of significance for the client -- and often, it is a moment they will remember for the rest of their life. Learning of your HIV diagnosis, like that of any chronic or life-threatening illness, can be traumatic. Trauma often causes grief . . . "
The Emotional Impact of an HIV Diagnosis by Andrea Peirce (2019) - "Hearing that you have the human immunodeficiency virus, or HIV, will change your life. In the days, weeks, months, and years after you learn that you have HIV, you may experience all kinds of emotions, including anger, shock, sadness, or even denial. You may also struggle with depression. An HIV support network can help you work through a range of complicated feelings . . ."
Though Not A Death Sentence, HIV/AIDS Still Holds A Powerful Stigma NPR Weekend Edition (2015) - "In the U.S., an estimated 1.2 million people are living with HIV, according to the CDC. New infections are down from the peak in the 1980s, but the epidemic is nowhere near over. HIV/AIDS has affected millions of people around the world. In this country, gay men have been hardest hit. Today on For the Record: HIV then and now. Two survivors, from two different generations, tell their stories. Click the audio link on this page to listen to the full conversation . . ."
What Is HIV/AIDS? Symptoms, Causes, Diagnosis, Treatment, and Prevention by Joseph Bennington-Castro (2019) - "Human immunodeficiency virus, or HIV, is a virus that attacks the body's immune system. Specifically, the virus infiltrates and then spreads from people's CD4-positive (CD4+) T-helper cells. Those cells, which are sometimes also referred to as CD4 cells, T-helper cells, or T4 cells, are white blood cells that are part of the immune system. They play an important role in identifying pathogens that invade the body and in marshaling an immune response against them . . ."
Books
Book, Chapter 5 Grief and Loss in HIV/AIDS Work by Noel Elia (1997) - "The instant the client receives test results showing infection, the client becomes a participant in the ongoing grieving process . . . "
Heavenly Hurts: Surviving AIDS-Related Deaths and Losses by Sandra Jacoby Klein (2018) - "In the AIDS pandemic, efforts are focused on persons living with AIDS (PLWA). Neglected are professional and non-professional caregivers, families, and friends. They are surviving deaths of loved ones from AIDS-related illness, or are dealing with multiple losses of HIV/AIDS. "Heavenly Hurts" provides guidance, support and coping skills, along with discussions of death language; AIDS grief; death in the workplace; and cultural and spiritual issues around death . . ."
HIV/Aids: Loss, Grief, Challenge And Hope by Mary O'Donnell (1996) - "HIV/AIDS losses are often uniquely complex and strike at the very heart of individuals, life partners, families, extended families, tax bases, health care systems, and entire nations . . . "
HIV Mental Health for the 21st Century by Mark G. Winiarski (Editor) (1997) - HIV "Mental Health for the 21st Century provides a roadmap for mental health professionals who seek to develop new strategies aimed at increasing the longevity and quality of life for people living with HIV/AIDS, as well as at controlling the future spread of the disease. Divided into five sections, this volume covers basic concepts in HIV/AIDS mental health; specialized aspects of HIV/AIDS clinical care; models of clinical care; program evaluation; and HIV mental health policy and programs . . . "
Multiple AIDS-Related Loss: A Handbook for Understanding and Surviving a Perpetual Fall by David Nord (1997) - "This book strives to legitimize the profound pain experienced by many survivors of AIDS. Normalizing the abnormal experience of survivors is an important coping strategy emphasized throughout.; Taking a personal look at this tragedy, the book presents the stories and experiences of survivors. It also outlines the historical context of AIDS and characteristics of multiple-AIDS related loss, and explores grieving multiple loss and the problems for survivors in both grief, adjustment, and traumatization . . . "
Recovering from the Loss of a Loved One to Aids by Katherine Fair Donnelly (1994) - "A reassuring volume by the author of Recovering from the Loss of a Child offers straightforward help to family, friends, lovers, and coworkers of people who have died or are dying of AIDS, in a guide that includes lists of supportive resources."
Other
Brochure: Losing A Loved One to AIDS by Kelly Baltzell and Karin Baltzell - "Losing a loved one to AIDS can be devastating. To compound the loss there is often a lack of effective grief support offered to people who have lost a loved one to AIDS. Research on this type of loss is scarce but there are some commonalities found in people suffering an AIDS-related loss . . . "
Fact Sheet: Grief in HIV/AIDS related death (2019) - "Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have challenged society over the past four decades. Issues for HIV positive people are complex and may complicate the processes of grief, public expressions of mourning and post death healing . . . "
Teaching Tip Sheet: Multiple Loss and Aids-Related Bereavement - "People who grieve the death of someone from HIV-related complications often also face a unique set of issues that challenges historical models of bereavement (Kain, 1997). Rather than approach bereavement from a perspective with strict developmental stages or tasks, current models of bereavement take into account the experience of people who have lost a loved one to HIV-related complications and allow for the flexibility of each individual's experience. AIDS-related bereavement may differ from traditional models in at least four ways . . . "
Afterword: Bless you Marty. I have read some of these articles and they are SO helpful, especially for me! I found the article on Coping with Hidden Sorrow especially helpful. Several of our younger participants in an earlier group had that hidden sorrow due to parents dying of HIV/AIDS and a father who was murdered in a public shootout at the airport (he was on drugs), and others. Thanks so much for your passion and love that continues to provide the public (and us) with your endless knowledge about these topics. You are a bottomless well of inspiration and information.
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