Loss occurs when something is left behind; grief is the emotional reaction to the loss. Allogeneic stem cell transplant survivors with graft-versus-host disease (GVHD) can experience many losses that trigger a grief reaction, including disenfranchised grief. With a better understanding of disenfranchised loss and grief, oncology nurses can support people living with GVHD and their caregivers.
What Is Disenfranchised Grief?
People don’t just grieve the death of a loved one. Loss and grief can occur from losing something with a particular value or meaning. People can grieve aspects of their lives that are gone, such as cognitive function, fertility, or employment. When loss does not “fit” with typical societal definitions, the grief can be unrecognized or undervalued; this is called disenfranchised grief. Since they can be on a continuum, disenfranchised loss and grief may be used interchangeably.
The term “disenfranchised loss” was coined in 1989 by bereavement expert Dr. Kenneth Doka in his book, Disenfranchised Grief: Recognizing Hidden Sorrow. This grief is generally from a loss that is not usually openly acknowledged or validated by society. It describes a response that doesn’t always align with society’s expectations.
Since disenfranchised grief is not publicly acknowledged, shared, or socially sanctioned, people may feel it is insignificant. As a result, people living with GVHD and their caregivers may feel alone or isolated. They may feel their grief is invalid or they don’t have a right to it.
What Are Examples of Loss in GVHD Survivors?
People living with GVHD can have multiple losses affecting all well-being domains: physical, emotional, psychosocial, spiritual, and financial. Both acute and chronic GVHD can profoundly affect patients’ quality of life, contributing to the loss.
| Loss Category | Types of Loss | Example |
| Physical | Ability to have or enjoy sex
Bodily function Cognitive functioning Comfort or lack of pain Energy or endurance Fertility |
Skin changes with acute or chronic GVHD can leave visible evidence of disease, and medications are a constant reminder of their condition.
|
| Emotional | Future planning
Mental health issues Role definition Self-esteem or identity Sense of control Sense of well-being |
Fatigue and body image changes can cause low self-esteem or identity issues. Many people living with GVHD feel like they are a burden on their family or friends. |
| Psychosocial | Ability to eat out or travel
Community Independence Livelihood or work Position in the family Relationships |
Feelings of loss of control and distress imposed by living day-to-day with a GVHD diagnosis can overwhelm patients and their support system.
|
| Spiritual | Abandonment
Anger Hopelessness Victim mentality |
Some people living with GVHD may question their faith, beliefs, or value system. Others may be unable to find sources of meaning, hope, love, comfort, strength, or connection. |
| Financial | Employment
Income generation Insurance coverage or rate changes Life insurance Out-of-pocket costs Retirement Security |
Financial toxicity can directly result from employment or potential employment loss, insurance coverage, copayments, or indirect costs. As a result, some people worry about finances.
|
What Are 5 Steps for Oncology Nurses to Support GVHD Survivors’ Grief?
Oncology nurses can help patients understand the importance of mourning losses with these 5 steps:
- Assess it. Cancer care teams routinely screen for depression, anxiety, relationship challenges, and distress, but rarely for grief.
- Name it. Explore a range of vocabulary terms, including grief, to describe their feelings so patients can begin to process them.
- Talk about it. Tell patients it is normal to grieve the loss of different aspects of their life due to GVHD, such as their health, role, job, lifestyle, or activities.
- Explain it. Educate patients that grief differs from depression or anxiety, even though some symptoms are the same.
- Offer support. Communicate with the multidisciplinary team to connect patients with assistance or refer them to therapists. BMT InfoNet hosts support groups for people living with GVHD and their caregivers throughout the year.
Oncology nurses can advocate for grief education beyond the 1969 work of Dr. Elisabeth Kübler-Ross, who defined the 5 stages of grief paradigm of denial, anger, bargaining, depression, and acceptance. Today, grief does not always have predictable patterns or stages. With more education and understanding, oncology nurses caring for people living with GVHD can better support their grief.
References
What to Know About Disenfranchised Grief
Disenfranchised Grief: Recognizing Hidden Sorrow
The Importance of Mourning Losses (Even When They Seem Small)
