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HIV: Therapeutic Strategies for Guilt, Uncertainty, Taking Control
As with any therapeutic relationship, counselors need to become aware of and manage their own reactions. This can be particularly important when working with persons with HIV/AIDS, since the powerful nature of the issues may elicit emotional responses from counselors (Bernstein & Klein, 1995). It is not just the clients that have to deal with the uncertainty and resulting loss of control. Therapists must find ways of coping with not knowing if their clients are healthy and not knowing if they will respond. Often counselors must deal with the disappointment of reemergence of this illness in their clients. Counselors may earnestly desire to help, but what if there is nothing they can do? How do they cope with feeling ineffective and discouraged?
Although counseling is a unique and individual process, there are some common reactions and patterns that counselors may demonstrate. For some, remaining optimistic, despite data to the contrary, may be a way of managing anxiety. This stance communicates to their clients, either directly or indirectly, the advice to "just keep fighting it, the right treatment is just around the corner, we will find the drug that works for you." This position creates a milieu unaccepting of the client's need to process fears around getting ill or nonresponding. Additionally, clients may feel they are letting their counselor down or being unsuccessful in their mental health treatment if they make decisions to not adhere to medical protocol or if they do not respond positively to medications.
Other counselors err on the side of negativity. Perhaps they have been let down too many times and cannot tolerate disappointment again. Instead, they maintain a rather cynical attitude about HIV/AIDS treatment. They communicate to their clients, either directly or indirectly, ideas such as, "There will never be a cure; I have seen too many people die. Don't trust the medical environment." This style can reinforce negativism in already discouraged clients and stifle positive attempts to fight the disease.
Not unlike their clients, counselors can become adept at the use of denial or avoiding issues. They can join the clients in not discussing what may seem obvious. In effect, they are saying, "You are really not that sick. We need to focus on how well you are doing. Let's not let AIDS rule our sessions. Tell me about your feelings around your mom." This approach, however, leaves no room for the necessary work to be done. Instead, it reinforces a rather primitive coping style.
Finally, some react by becoming overly active in their sessions. The "fix it" strategy encourages clients to take action, but may prevent both counselor and client from uncovering salient issues.
Perhaps all of these reactions are ways of dealing with a treatment outcome that has so many unknowns and uncertainties. Yet, it is imperative to stay with clients, to join with them and to be willing to walk with them through the maze created by the complexities of treatment remains. To do this, counselors have to tolerate their own feelings regarding these difficult issues. They can not assume they have answers. Instead they need to acknowledge that it is an issue of utmost uncertainty. Becoming aware of and understanding their own defensive style can help counselors manage dysfunctional patterns that interfere with effective therapy. For instance, understanding that one deals with uncertainty by avoiding it may help the counselor to recognize when he or she begins this avoiding. and one can decide to take a more conscious and effective therapeutic stance.
Counseling Interventions: Generally, counselors are taught to inspire hope in their clients, work towards problem solving, help clients make positive plans in their lives, and discover solutions. However, when working with persons with HIV disease, a problem-solving, positive-outcome paradigm may not be indicated. For some, there is no "solution" to the problem of HIV/AIDS. Originally, counseling persons in the HIV spectrum involved largely helping people deal with an imminent death. Now the paradigm is analogous to counseling clients with chronic illnesses and disabilities. What is helpful is to work on the management of symptoms and the adjustment to frequent losses and changes. Although treatment models based on the bereavement and mourning literature (Rando, 1993) have been found useful in working with persons with AIDS, applying these models to all clients in the HIV spectrum may be too simplistic (Schneider & Rubinstein, 1998). Persons with HIV may feel incredible hope while they also are grieving multiple losses. Thus, grief work is important but not sufficient in and of itself.
Maintaining Psychological Presence: As with all counseling paradigms, learning to respect, honor, and support clients with HIV disease is paramount. Perhaps an appropriate metaphor is that of "riding the roller coaster" with clients. In other words, counseling clients with AIDS may mean learning to travel along side clients in their respective "up and down" journeys, sharing the experience without developing a preconceived agenda. Presence includes trusting the wisdom of clients regarding themselves and their choices. Presence means not abandoning clients as they experience frequently intense and unpredictable stresses. Consequently, counseling can be truly a safe place where clients can express and receive validation for all their reactions, disappointments, and joys.
The Counseling Process: Clients may need a place to express pain and rage; thus, a place to not be optimistic. They may feel guilty for being negative, feel that they should be hopeful due to the new treatments, but instead they are angry and bitter. A counselor can give clients permission to have and express these more negative, but valid feelings. Providing a safe forum for the emotions can help clients get in touch with and face very frightening feelings, a process they could not do alone. Support networks, (e.g. friends and family of persons with HIV/AIDS) may be so involved in their own emotions and reactions that they have difficulty tolerating the client's negative affect and thus counseling may be the only avenue for clients' expression of all feelings.
Additionally, clients may need a neutral space to explore difficult decisions. Clients may want to use counseling to discuss assisted suicide or other hastened death options (Rosenfeld et al., 1999; Werth, 1999). Due to horrible side effects, clients may struggle with the possibility of terminating their drug therapy despite the opposition of friends and family. In some, decisions around career planning can be quite complex. As clients struggle with these decisions, linking them to effective referral sources can be very helpful, e.g. attorneys specializing in HIV issues, representatives from religious communities (Holt, Houg, & Romano, 1999) and appropriate medical personnel.
Nonresponders to treatment may have unique counseling needs in assisting them in processing disappointment and grieving their fantasy of successful outcomes. Counselors may use cognitive techniques to help clients challenge their irrational belief systems such as shame and self-blame (Church, 1998).
Counseling can assist with issues around adherence. Helping clients gain understanding of their own patterns of resistance and corresponding behaviors may give clients opportunities to change behaviors and make choices that are more thoughtful. Moreover, counseling can support clients in developing strategies that improve adherence, for example, setting timers and developing reinforcers, like taking a vacation after three months of medication compliance.
The advent of new medical treatments for HIV/AIDS has demonstrated a positive impact on the physical and psychological management of this disease. However, dramatic psychological implications ensue with corresponding issues for counselors. Clearly, counseling can be helpful to clients dealing with the myriad of issues that continue to surface. As the therapist provides a safe milieu, counseling can be a place to be unsure and unsettled, where clients can experience and express anger and disappointment without worrying about negative reactions. The therapeutic process can help clients discover options and make decisions, explore adherence issues, and change behavior. Yet, counselors must be able to explore and accept their own feelings and reactions to the complexities of this work. The support of other colleagues, friends, supervisors, and peers remains critical. Counselors are challenged to remain on the roller coaster with clients albeit a very chaotic ride.
Reflection Exercise #6
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