Living with acute or chronic graft-versus-host disease (GVHD) is challenging for patients and their caregivers. They often deal with significant symptom burden affecting their quality of life and functional abilities. Particularly with chronic GVHD, patients can develop skin and joint changes that can have an impact on their activities of daily living. It can be difficult for them to cope, especially with ongoing symptoms. As a result, patients with GVHD can experience psychological distress ranging from depression, anxiety, existential distress, and posttraumatic stress disorder (PTSD).
During a beyond Oncology/Dallas Chapter of the Oncology Nursing Society’s Growing in Knowledge conference, I joined a panel discussion with Erika Graham; Alex Huffman, LCSW, OSW-C; and Fatemeh Youssefi, PhD, RN, OCN, on a case study of a patient with GVHD-related trauma.
Josh is a 46-year-old white male who received an unrelated mismatched stem cell transplant 2 years ago for chronic myeloid leukemia (CML). He was diagnosed with severe chronic GVHD (cGVHD), particularly of the skin and eyes, for the past 18 months. He can no longer work and cannot attend many activities with his 9- and 11-year-old children due to excessive fatigue, emotional distress, and mobility problems. cGVHD is affecting his marriage. His relationship with his wife has changed from a partnership to a patient/caregiver relationship. He is experiencing nightmares about his body image, is constantly feeling “on edge,” and is having difficulty finding meaning and purpose in his life.
Josh survived his stem cell transplant and CML, but the side effect of GVHD is causing trauma due to loss. Alex Huffman states, “He is grieving the loss of his role, his expectations of life at age 46, and loss of what he wanted to do with his family.” Essentially, Josh is grieving the loss of his hopes and dreams. This type of grief is called disenfranchised loss.
Disenfranchised loss is generally grief or loss that is not usually openly acknowledged or validated by society. It does not result from death but other areas that can be hard for individuals on the outside to understand. For example, his friends might say, “What is going on, Josh? You did it. You made it through your transplant.” When loss does not “fit” with typical definitions, the grief can be unrecognized or undervalued. Looking at Josh’s multiple losses, this is complex grief that can be a connection to trauma.
“This man has had his resiliency attacked,” said Erika Graham. “It is grief of whom you thought you were.” Once the transplant is over, much of the supportive network disappears. Yet survivors continue to experience long-term side effects like cGVHD.
Alex Huffman adds, “Patients cannot grieve multiple losses at once, so they will need a starting place.” Oncology nurses can help connect patients and families to a trusted therapist or counselor to support them through extended care. With support, he can begin to explore what survivorship and living with cGVHD will be for him. The goal will be some acceptance of what is in the present.
Josh’s significant body image changes and negative feelings could cause him to feel lost or unlovable and view himself differently. These issues can cause a lack of interest in sex and affect his relationship with his wife. Oncology nurses can begin to explore with Josh and his wife what intimacy looks like now because there is a spectrum for intimacy and connection. In addition, many cancer centers and Cancer Support Communities offer in-person and online support groups where this couple can talk with other couples who can relate to their journey.
Alex Huffman summarizes by saying, “Healing is not a destination. This is not the beginning of his story nor the end of his story.” Dealing with this trauma will be a lifelong process for Josh.
As in this case study, oncology nurses must first learn about a trauma-informed approach to care and then apply proven frameworks for a more inclusive trauma-sensitive approach. A key point is trauma-focused interventions help patients deal with PTSD after a cancer diagnosis, intensive oncology care, or side effects like GVHD. The care team needs to empower the patient’s voice rather than silence it.