April 30, 2013
Widespread publication of the treatment cascade has heightened the level of concern for engaging and retaining patients in HIV care. A significant percentage of persons living with HIV are unaware of their status, and an astonishingly low number of people have successfully suppressed their viral loads. Despite recent articles that have reported potential variation in these calculations, it is clear that a significant number of people remain out of care, marginally engaged or worse.
While the causes for such poor therapeutic achievement are complex, a central factor is certainly the emotional skillset of patients and their ability to manage the negative psychosocial effects of chronic illness. HIV is an unwelcome companion that requires significant and ongoing adjustment and adaptation. Whether when first testing positive, starting medications, being diagnosed with an opportunistic infection or even experiencing HIV-related stigma, strong emotions emerge, which require both knowledge and skills to retain emotional balance. Without them, it is likely that patients will disengage through outright resistance or more subtle and often subconscious strategies, such as avoidance or recreational drug use.
Most patients dealing with HIV at first experience only loss, specifically their potential for good health, a sense of security, hope for the future and sometimes even family and friends. There are patients that can, however, work through these powerful feelings and incorporate acceptance into their lives in ways that can be profound, and which affect their personal health outcomes as well as their ability to impact others. For them, living with HIV has meant not only things lost, but new potential found.
Although this emotional resilience is highly variable among individuals, its development follows a predictable course that can be enhanced by health care professionals. It involves an understanding of change and how people react to it, and most important, guiding people through next steps while providing a sense of empowerment.
Through years of psychotherapeutic work with persons living with HIV, I have been consistently struck by the ability of many long-term survivors to incorporate the virus into their lives so that it is not granted a central role, but rather is an undeniable part of themselves that must be accommodated. This is a form of processing trauma, in which the negative emotional power is felt and expressed, thereby removing overwhelming feelings and leaving a more empowered sense of self.
I witnessed this recently at a group for long-term survivors, some of whom were in good health and others who experienced chronic pain or some other constant reminders of HIV. Each one had evolved to a place of peace with the virus and, more important, each had actually taken the devastation of infection and turned it into a source of strength and empowerment. HIV shifted the life path of nearly everyone in the room in ways they ultimately viewed as beneficial. They had experienced many losses due to HIV but had, unexpectedly, found other rewards. Many attributed the virus with a development of spirituality, an increase of community involvement, a healthier lifestyle or even (as in my own case) entirely new careers. Every person had somehow managed to retain a sense of empowerment through psychological shock, health setbacks, physical ups and downs and an overarching sense of not knowing what tomorrow will bring. Each person experienced, at least to some degree, what some have called "post-traumatic growth."
Many health care professionals are uncomfortable engaging their patients at an effective level, preferring to leave "emotional issues" to support groups or mental health professionals. Addressing or even acknowledging these more elusive processes, however, can greatly assist patients in adapting to their particular situation and achieving a degree of acceptance where they can engage their internal resources and promote their own health.
Here are some methods for improving patients' emotional resilience:
Help patients identify and express feelings
When confronted with drastic change, people typically feel that everything they understand and rely upon has suddenly slipped away. People are triggered to respond as they did at other traumatic times in their lives, often regressing emotionally to a much younger age at which they had far fewer coping skills. Helping them to identify what they are feeling and to express it appropriately is vital to move them in a healthy way beyond this shock. Encouraging them to engage their own inner resources is helpful and calming. It is beneficial to remind them of another time they successfully coped with adversity, or invite them to think about what some strong figure in their life (such as a loving grandmother) might say to comfort them.
Create a safe emotional space
Sometimes the only thing we can do is "hold space" for someone. This simply means taking a few moments to allow them to identify and express their feelings. The intensity of such moments can be extremely difficult because we too become triggered. At such times we need to heighten our own self-awareness and hold our responses in check, conveying psychological safety and giving the patient the space for their own process without rescuing them or cutting them off.
Keep the patient empowered
Once the feelings are expressed, practical steps to address the situation must be identified. Of course, patients rely on physicians to guide them with their medication regimen, but it is crucial to include the patient as a collaborator in this process. Losing a sense of empowerment is a critical factor resulting in patients drifting away from ownership of their health and medical care. Mental health professionals stay tuned in to "where the patient is," that is, keeping information and suggestions relevant to the person's level of knowledge, individual motivation, and other important cultural aspects, all the while keeping an awareness of the patient's psychological, social and even spiritual life in the context of medical care.
Assist in visualizing healthy possibilities
Patients can usually understand how HIV and all its medical consequences will negatively impact their lives. More important, they need to be able to visualize how they can successfully incorporate health and wellness into their routines. Many will catastrophize or jump to overwhelmingly negative conclusions. Building on their strengths, reinforcing existing social connections or suggesting new supports is vital. A referral to a peer navigator or support group is an excellent way to assist the patient in discovering possibilities.
Converting losses into gains is a long process requiring a variety of skills, including self-awareness, the ability to fight resistance, a willingness to put plans into action and the promotion of flexibility and persistence. Co-occurring mental health disorders, including addiction, can easily sidetrack a patient from this path. Some patients are particularly vulnerable to the emotionally numbing effects of addiction when facing the pain of negative emotions. If present, co-occurring addiction and mental health concerns, which no doubt account for a significant portion of the treatment cascade, must be addressed, as they will interrupt the healing process.
When asked what accounts for their resilience, patients describe many things, including the ability to feel and express emotions, being connected to others, a sense of empowerment (if only that they will conduct themselves with grace in the face of any complication), some form of spirituality and outreach to others. With some luck, time and encouragement from providers, most patients can foster a degree of emotional resilience that will significantly contribute to their health and wellness.