Living Beyond Loss: An Intervention for Coping with HIV and HIV-Related Loss
Kathleen J. Sikkema, PhD
Advances in the medical management of HIV disease hold the promise of extending the life expectancy of persons living with HIV disease. Enhancing quality of life and alleviating adverse psychological sequelae among persons with HIV disease is of increasing importance as people learn earlier of their HIV-infected status and as improved medical treatment extends their life expectancy. One of the difficulties often faced by persons with HIV involves coping with the loss of others to AIDS. The prevalence and adverse mental health consequences of AIDS-related bereavement have been established within communities that experience repeated losses of friends, lovers, and family members; people who are HIV positive consistently report the highest level of distress. Although people have always been confronted with loss and bereavement, loss due to AIDS carries unique ramifications that complicate adjustment and coping. AIDS-related bereavement among those who themselves are HIV-infected may adversely effect quality-of-life and psychological coping with their own HIV disease.
"Living Beyond Loss" is a project for people living with HIV and HIV-related loss conducted through the Center for AIDS Intervention Research (CAIR) at the Medical College of Wisconsin and supported by the National Institute of Mental Health (NIMH). The objective of this research is to evaluate the effectiveness of a group psychotherapy intervention for secondary prevention of psychological distress among people with HIV infection who are coping with AIDS-related bereavement.
Goals of "Living Beyond Loss"
The goals of our project are to enroll 250 men and women with HIV infection who have lost a loved one to AIDS, are currently experiencing AIDS-related grief symptoms, and psychiatric distress as demonstrated during a semi-structured psychiatric diagnostic screening interview. At the time of study entry, each participants is assessed with measures of psychological distress (e.g., measures of global psychiatric distress, traumatic stress, and clinician ratings of depression and anxiety), grief reaction, social support, coping skills, substance use, and quality-of-life. The participants are randomly assigned, stratified by psychiatric diagnoses and use of psychotropic medication, to the AIDS-related bereavement coping and cognitive-behavioral group therapy intervention or to a comparison condition of individual therapy upon request. The efficacy of the intervention will be determined by comparing whether HIV-infected participants in the AIDS-related bereavement coping group intervention differ from participants in the comparison condition on the same measures used at baseline but repeated at post-intervention and 4-, 8-, and 12-month follow-up points.
The group therapy intervention model combines elements of social cognitive theory, theory of stress and coping, and bereavement coping. In pilot research, we found that a support and coping group intervention for persons experiencing AIDS-related bereavement can produce reductions in grief reaction and psychological distress (Sikkema, Kalichman, Kelly, & Koob, 1995). The key components of this intervention model include:
Development of social support and group cohesion;
Identification and expression of emotions related to HIV and loss;
Identification of coping difficulties specific to living with HIV infection and AIDS bereavement;
Identification of current coping strategies;
Goal setting; and
Implementation of adaptive coping strategies to reduce psychological distress.
Co-therapists conduct the twelve-session psychotherapy groups with separate groups for gay and bisexual men, heterosexual men infected primarily through injection drug use, and women.
Evidence Supporting Coping Interventions for Managing Loss
Prior to the implementation of "Living Beyond Loss," a preliminary study was conducted to determine the prevalence, nature, and severity of AIDS-related bereavement among persons who are themselves HIV-infected (Sikkema, Koob, & Heckman, 1997). A sample of 199 HIV-infected participants who were clients of a major AIDS service organization or patients receiving health care from HIV medical clinics were recruited to complete a mental health needs assessment. The mean age of the participants was 36.7 years (SD=7.0, range 19-61) and the mean level of education completed was 12.3 years. Eighty-four percent of participants were males and 59% were African American, 32% were white, 4% were Hispanic, and 5% were of other ethnicities. Sixty-five percent described their sexual orientation as gay or bisexual and 35% identified themselves as heterosexual.
HIV bereavement experiences among these HIV positive participants were both prevalent and severe. Of the 199 participants, eighty percent reported the loss due to AIDS of a spouse or partner, a family member, or a close friend. Eighty percent of those participants who described any bereavement experiences reported that they had multiple and repetitive bereavements due to the loss of partners, family members, or friend to AIDS. On average, HIV-infected participants had experienced 13 AIDS-related deaths with a range of two to one hundred fifty losses.
Depression, traumatic stress, and grief levels were very high among participants who reported AIDS-bereavement. AIDS-bereaved participants had elevated scores on the Beck Depression Inventory, the Global Severity Index (GSI) of the SCL-90-R, the Impact of Events Scale, and the Grief Reaction Index. Severity of grief reaction was related to psychological distress and maladaptive coping. Correlational analyses demonstrated significant relationships between greater severity of grief reaction and higher levels of psychiatric distress as measured by all subscales of the SCL-90-R, cognitive-affective and somatic subscales of the BDI, intrusive and avoidant experiences related to traumatic stress, and avoidant coping.
Results of our survey study show that a large majority of HIV positive men and women, in addition to the challenge of their own illness:
Experience AIDS-related bereavement;
Report that problems in coping with losses of their loved ones to AIDS are among their most severe problems;
Exhibit elevated scores on measures of depression, general psychiatric symptomatology, and grief;
Report avoidant ways of coping in relation to elevated levels of grief reaction; and
Express the desire to receive assistance in coping with AIDS-related bereavement.
The prevalence and seriousness of bereavement coping problems among HIV positive persons indicate that this is a significant mental health and important secondary prevention need among persons with HIV infection.
Current Status of Our Research
"Living Beyond Loss" is being implemented in collaboration with the Medical College of Wisconsin HIV Clinic at Froedtert Memorial Lutheran Hospital, the AIDS Resource Center of Wisconsin, and the Madison AIDS Support Network. To date, over 150 participants have enrolled in the project. The average age of the participants is 39; the sample is 78% male; 56% are African American; 34% white; 6% Hispanic, and 4% of other ethnicities. Sixty-six percent described their sexual orientation as gay or bisexual, and 34% as heterosexual. Nearly one-fourth (22%) of participants reported a history of injection drug use. One-half of the participants have completed a high school education and two-thirds have an income of less than $10,000. The average Grief Reaction Index score among enrolled participants was 20.4 (SD=10.1), in addition to elevated scores on the Beck Depression Inventory and the Impact of Events Scale. Loss history assessments indicate that nearly one-half of participants have lost a partner/spouse, one-third a close family member, and nearly all (94%) have also lost a close friend.
The bereavement coping group therapy intervention has been completed with women, heterosexual male injection drug users, and gay/bisexual men. While the program reaches out to diverse populations, the bereavement groups are designed to build on the similarities of the group members. Psychotherapeutic themes commonly emerging among all groups have focused on coping with losses due to AIDS deaths, the physical and medical issues related to HIV disease, and the emotional and social consequences of living with HIV infection. In addition to losing loved ones to AIDS and facing their own HIV-related health problems, the participants must often contend with other losses, including unemployment, diminished status, loss of housing and economic instability. Treatment issues related to substance abuse and premorbid psychopathology must also be considered and integrated into the intervention protocol when necessary.
Specific strategies for dealing with problems of loss and grief include establishing a sense of control and predictability, emotional expression and management, resolution of guilt, and promoting self-mastery through adaptive coping and empowerment. Group members are given the opportunity to present their personal story or situation and current needs or issues concerning the AIDS-related losses. The theme of social support and group cohesion has been essential throughout the intervention, initiated by this personal disclosure and facilitated by the group therapists. Emotional expression is typically a significant part of the members? personal disclosure, while identifying feelings and developing effective ways for expression is integrated throughout the intervention. In order to implement adaptive coping strategies to reduce psychological distress, group members identify coping difficulties specific to living with HIV and AIDS-related losses. The intervention coping model (Folkman et al., 1991), including the distinction between problem-focused and emotion-focused coping, is presented by the group therapists. Group members identify current coping strategies and set short-term goals that can be achieved on a weekly basis, and establish mid-range goals for coping with AIDS-related losses that can realistically be achieved by completion of the group. The final intervention component involves the implementation of the adaptive and appropriate ways of coping that reduce psychological distress, utilizing group members' support and feedback. Throughout the intervention the group therapists follow a structured protocol, tailored to the individual needs of the group members.
The HIV epidemic has taken an enormous toll on those with HIV infection and on those who care for and about them. The research findings that describe the psychosocial effects and uniqueness of symptoms associated with AIDS-related bereavement strongly suggest the need for development and evaluation of psychological bereavement treatment tailored for this population. There is now considerable evidence that problems in coping with AIDS-related bereavement are common, often severe, and of mental health significance for those left behind when a person with AIDS dies, especially when the bereaved person also has HIV infection. Specialized mental health services are needed for persons with HIV who have difficulty coping with HIV infection and AIDS-related bereavement, and increased clinical research is needed to identify and evaluate what types of services are most effective for secondary prevention among persons with HIV infection.
Folkman, S., Chesney, M., McKusick, L., Ironson, G., Johnson, D.S., & Coates, T.J. (1991). Translating coping theory into an intervention. In J. Echenrode (Ed.), The social context of stress. New York: Plenum Press.
Sikkema, K.J., Kalichman, S.C., Kelly, J.A., & Koob, J.J. (1995). Group intervention to improve coping with AIDS-related bereavement: Model development and an illustrative clinical example. AIDS Care, 7, 463-475.
Sikkema, K.J., Koob, J.J., & Heckman, T.G. (1997, April). Prevalence and predictors of AIDS-related bereavement among HIV-infected men and women. Paper presented at the Eighteenth Annual Meeting of the Society of Behavioral Medicine, San Francisco.