managing grief in an AIDS organization
by Kitty Schoen, LCSW
After more than a decade, cumulative losses have saturated the private and work lives of AIDS/HIV service providers. Consequently, grief, traditionally thought of as a personal matter, must become a concern of organizations. Many workplaces, however, are largely unprepared for coping with multiple losses and are suffering from complications associated with grief. The strategies outlined in this article suggest ways organizations can cope with chronic loss and minimize the destructive consequences of grief.
sources of grief
Grief and loss are not new issues, especially in human service and health care settings. Yet in AIDS organizations, a combination of factors contribute to the exceptional role of grief and its intensity. First, the exponential growth in the number of cases of HIV infection and deaths and routes of HIV transmission have resulted in the concentration of losses within families, friendship networks, and communities. Second, the high numbers of organizational staff ~ and their friends ~ and volunteers who have AIDS/HIV is unusual among health care agencies focusing on a specific disease such as cancer or heart disease. Third, staff members often rely heavily on co-worker support to counteract the stresses of AIDS/HIV caregiving, and the illness or death of a coworker becomes a source of additional grief. All of these conditions combine to create chronic traumatic stresses, and AIDS/HIV organizations of all sizes ~ from large agencies to private mental health and medical practices with small staffs ~ are, in effect, "grieving organizations.o/oo
Why have so few AIDS/HIV service organizations addressed grief-related stress? A large part of the answer lies in the cultural relationship to grief in the United States. The grieving process is poorly understood, largely invisible, and its impact minimized. There is little precedent in the workplace for addressing personal issues, especially ones as profoundly personal as grief. Some managers have feared that, if they addressed grief directly, they would be opening a Pandora,s box of uncontrollable emotions and expectations that they will provide employees support for other personal issues. They have also been concerned that grief support would require unreasonable amounts of time, money and other resources. Finally, many AIDS/HIV service organizations have been in the early stages of development and have only now been able to attend to the pressures of constant loss.
the dynamics of loss saturation
Organizations experience the effects of grief at all levels: among individuals, within groups, and pervasively throughout the organization. The symptoms of loss saturation in organizations closely parallel the impact of grief on individuals. Most can be attributed to the emotionally and physically draining nature of grief, the lack of acknowledgment and support for the grieving process, and feelings of helplessness, rage, and survivor guilt.
Responses to loss ~ anticipatory grief, bereavement, and trauma ~ are all complex experiences that change over time. Sometimes their impact is obvious, immediate, and compelling. At other times, they are like an undertow, exerting a powerful but invisible influence. A wide range of sometimes conflicting feelings are a normal part of the grieving process. They include sadness, despair, relief, loneliness, anger, elation, emptiness, guilt, meaninglessness and meaningfulness. Three concepts are particularly important in characterizing loss saturation: unresolved grief, survivor guilt, and post-traumatic stress.
Unresolved grief often plays a substantial and hidden role in organizational problems such as reduced productivity, low morale, increased turnover, difficulty settings limits, and inadequate attention to positive feedback and informal support. These problems become more deeply entrenched when employees believe it is unsafe or unprofessional to mention the hard-to-manage feelings associated with grief.
Survivor guilt is another powerful but largely invisible phenomenon. For most people, it is difficult to reconcile personal well-being with the dire circumstances others face. AIDS, because it is so serious and, in some areas, so pervasive, evokes a particularly stark contrast between those who are infected and those who are not. The urge to create a more equitable balance between the poles makes it difficult for some individuals and work groups to set limits or take adequate care of themselves, causing them, for example, to overwork. The result is a state of sympathetic "dis-ease.o/oo It is also typical for loss-saturated organizations to focus less and less on the positive aspects of work, including positive feedback and acknowledgment, celebration of life events, and activities that nurture staff members.
The post-traumatic stress model is helpful in understanding another common dynamic experienced in loss-saturated work environments. According to this theory, individual reactions to trauma swing between adaptive numbing and a flooding of feelings. In the workplace, this frequently leads to tension between those at opposing ends of the spectrum and to accusations that some are "over-involved,o/oo and others are "jaded and burned out.o/oo This dynamic is often reflected in conflicts between new and old staff, direct and indirect service providers, and seropositive and seronegative staff, or along social divisions of gender, class and race.
planning a response
To respond to these pressures, organizations must create a culture that openly acknowledges the presence of grief and gives permission to staff to express a range of reactions to loss. This is most effectively accomplished through a planning process that seeks to develop ongoing and easily maintained strategies aimed at both day-to-day operations and formal structures, policies, and benefits.
The main hurdle to achieving these goals is gaining recognition that grief-related issues are appropriate and important for an organization to address. Once this is accomplished, a straightforward planning process in itself an intervention, since it acts as a formal acknowledgment that grief has an impact on work, can be employed to develop strategies tailored to the specific needs of the work site. The success of the planning process depends on two conditions. First, it is important to have input from the entire staff, and in some agencies, volunteers. The involvement of staff members counteracts their feelings of helplessness, a common effect of loss saturation. Second, since organizational strategies may include the revision of policies and benefits, and changes in the workplace as a whole, management support is crucial.
An assessment is the first step of the planning process. The assessment seeks to define the problem; identify confounding organizational issues such as changes in structure; begin to clarify staff expectations of the organization; and provide baseline data for evaluation purposes. In defining the problem, it is helpful to note trends related to demographics, departments, or job classifications. For example, direct service providers may be particularly vulnerable to distress, or there may be departments where staff ~ responding to personal or workplace losses ~ may be more subject to loss saturation.
Developing a training program, the second step, can lay the groundwork for understanding and discussing grief in the workplace. The primary objective of training is to impact an appreciation of the range of "normalo/oo responses to loss and experiences of grief, and to explain why people react differently. Sometimes it is helpful to offer training to supervisors first because of their central role in creating a supportive environment. Ultimately, an all-staff training is necessary, because it serves as a collective acknowledgment of loss and creates a common framework for discussion and strategy development.
strategies for addressing grief
The training process sets the stage for developing strategies in four categories: identifying ongoing ways to acknowledge losses; providing support for a range of grieving experiences and needs; making changes in policies and benefits; and creating mechanisms to acknowledge appreciation of staff. Strategies need to address all levels of the organization and should take place in many arenas, including during all-staff meetings, within individual departments, and through committees of staff representatives.
Acknowledge Loss. The ongoing acknowledgment of loss reminds staff that there are external sources of psychological distress and minimizes the tendency of staff to blame themselves, others, or the organization for this distress. The first step in this process is for supervisors to convey the news of a loss sensitively, consistently, and confidentially to all appropriate staff. In one agency, the personnel director developed a folded note card to distribute when an employee had died or wished to disclose a disabling illness or personal loss. Other direct service groups have used paper hearts with patient names to notify staff of deaths of clients; "change boardso/oo to show not only deaths, but also all major changes in client status; and staff journals, scrap books, and periodic memorials. Employers can incorporate into staff meetings, case conferences, or team building sessions, designated times for discussing the impact of loss on staff.
Provide Support. Support strategies seek to create opportunities for "debriefing,o/oo that is, expressing emotions associated with loss and illness. Different coping styles require different support strategies. While informal support may occur spontaneously among employees, especially when loss is frequently acknowledged in the workplace, many employers will have to develop more formal strategies.
Support groups are useful when carefully facilitated and focused on the content of work and its relation to grief, and not on other organizational issues. They must also allow for various styles of participation. When only a portion of the staff is involved in support groups, the workplace may become divided between those attending and those not attending. A monthly "team buildingo/oo session, including all staff members, is an effective alternative to a support group. Some work sites offer a paid hour off each week for staff to pursue their own forms of support~ranging from individual therapy and 12-step programs to exercise routines. Others sponsor on-site stress management, grief support, and relaxation programs to meet a range of staff interests and needs.
Assess Personnel Policies and Benefits. Changes in personnel policies and benefits are important not only for their tangible outcomes, but also because they incorporate an employer,s acknowledgment of grief into the culture of the workplace. This commitment helps sustain the changes initiated by the planning process.
Design specific personnel policies to offer support and to accommodate the acute and chronic stresses of grief. Redefine bereavement leave and dependent care leave policies to be inclusive of non-traditional family members and friends, or to be used at the discretion of employees. "Planned sick leaveo/oo or "mental health dayso/oo give staff an opportunity to take time off when feeling overwhelmed, and allow employers time to plan for staffing. "Flex timeo/oo not only helps grieving employees adjust their work schedules, but also gives them more control over the conditions of work, a critical factor in minimizing burnout.
Formalize Staff Appreciation. Individuals and organizations need to balance the constant strain of loss by deliberately creating opportunities for positive interactions among staff. Identifying times for staff members to come together informally during lunches and outings, for instance, helps build trust and good will. Staff also need regular opportunities to talk about their accomplishments and goals and to receive feedback from supervisors and coworkers. Without such efforts, the interpersonal life of an organization can become bleak.
Once it is developed, distribute a description of grief-related strategies to new staff during orientation and to old staff at yearly personnel reviews. Continually evaluate the strategies, first at three to four months after implementation, and then at regular intervals, either semi-annually or yearly. Periodic evaluations help sustain grief interventions and adjust them to changing needs of staff members and the organization.
conclusion
It may be surprising that such a simple approach can really help organizations cope with grief and loss. While this process cannot change the magnitude of grief within AIDS organizations, acknowledgment of loss and support of employees makes the difference between a well-functioning organization and one diminished in effectiveness. By bringing difficult feelings into the open and implementing concrete solutions, employers and staff can understand the appropriate place of grief in AIDS work and get beyond the barriers of unacknowledged emotion.
© 1992 UC Regents. UCSF AIDS Health Project. Reprinted with permission of FOCUS: A Guide to AIDS Research and Counseling, a montly publication. All rights reserved. For information write to: AHP Box 0884, San Francisco, CA 94143-0884, or call (415) 476-6430. Annual rates: individual/US-$36, institutions/US-$90, limited income-$24.
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