International Society for Traumatic Stress Studies

A Community’s Voice: 9/11 Victim Family Outcomes 14 Years Later

06/22/2019
by Mary A. Fetchet, Joscelyn E. Fisher & Stephen J. Cozza
Witnessing the terror attacks on September 11, 2001 affected practically all of us who were alive at that time. But, for some, 9/11 was a far more personal and tragic experience. On September 11, 2001, nearly 3,000 families lost a loved one who perished at the World Trade Center, at the Pentagon or in Shanksville, PA. Although nearly 18 years have elapsed, for those who are the surviving family members of 9/11 victims, the impact of that event does not fade, nor do the memories or the sadness and grief that resulted from these terrible losses.

To date, little research has been conducted examining the long-term needs of victims’ families. To address this lack of knowledge, Voices of September 11th (VOICES; www.voicesofseptember11.org) partnered with scientists at the Center for the Study of Traumatic Stress, Uniformed Services University and the Canadian Resource Center for Victims of Crime to conduct a research study that included immediate and extended family members who lost a loved one in the 9/11 attacks. The study was funded in part by Public Safety Canada’s Kanishka Project Contribution Program.  The goal was to better understand the patterns of resilience and recovery, as well as the presence of mental health conditions that still exist in this population over a decade after 9/11. The accompanying scientific manuscript, Patterns of Comorbidity Among Bereaved Family Members Fourteen Years after the September 11th Terrorist Attacks, is the result of that community - academic collaboration.

Findings indicated that 15 years post-9/11, many among the 454 bereaved adult family members who participated in the study were healthy (66%) and did not report symptoms consistent with a mental health condition. However, the remaining one-third of the sample included two groups of individuals with higher probability of meeting screening criteria for depression, grief, and anxiety. One of these groups was more highly impaired and also had a greater likelihood of PTSD. Both of these symptomatic groups reported more post-9/11 negative life events than the healthy group and were more likely to be of younger age, have less education, and described being less satisfied with social support. The higher impaired group that reported symptoms of PTSD was more likely to include parents of the deceased and to have experienced non-9/11 lifetime traumas compared to the other two groups. Additionally, this group perceived their income as less adequate than the healthy group.

It is important to note that the results of the study may underestimate the proportion of 9/11 victim family members who continue to struggle with mental health conditions.  Some 9/11 family members we contacted during our outreach efforts declined to participate in the research study or had trouble completing the survey after they started. For example, one family member who declined participation noted, “I am not emotionally strong enough to participate”.  Another said, “It would be too difficult to look back”. Nevertheless, these research findings strongly resonate with the anecdotal information 9/11 family members have shared with VOICES over the 15 years post-9/11.

While providing long-term support services, VOICES has conducted annual assessments to evaluate the evolving needs of 9/11 family members. Family members seeking support services have shared details about the challenges they faced that affected their grief recovery, as well as their personal experiences in accessing resources and mental health care. Both the presence and lack of social support have often been described as contributing to how well victims’ family members adjusted following 9/11. Many families have discussed the important role of extended family members, friends, and the community in providing critical support, in both the short and long-term. One spouse commented, “My husband’s large extended family has always been there for us and therefore my children have many great role models and men in their lives.”  For some, their faith and religious leaders were a resource.  “Faith, family and friends”, is a frequent phrase used by members of the 9/11 community. In contrast to the families who became stronger, in some instances relationships between spouses and parents of adult children became strained or were totally severed, resulting in subsequent losses, such as when grandparents have lost touch with their grandchildren or other family members. “We tried to remain close, but things unraveled. 

We just couldn’t be together because we reminded each other of what we had lost”, noted one family member who sought support services from VOICES.  Relationships with extended family members and friends have also had the potential to become strained when family members’ grief continued beyond a time frame that their relatives viewed as “acceptable”. Comments such as “Aren’t you over this yet?” are not uncommon, leading to further misunderstandings and alienation.

In such circumstances, individuals have often found solace and support from relationships established with other 9/11 victim families who better understand the complexities of their losses.  9/11 family members have described the benefits of peer-to-peer group support, where they can confide in those who understand their situation because of their shared experience. A mother who participated in a peer support group for over a decade commented, “I don’t know what I would have done without my peer support group. They experienced the same loss, at the same time, and it was very comforting to be with one another. We walked side by side through the journey of grief.” In contrast, 9/11 family members who lived outside the tri-state area (both within the United States and in 90 countries who lost citizens) were geographically challenged in accessing information or support services, and have often felt isolated because they were unable to establish relationships with other victims’ family members.

In addition to finding that social support was a factor that contributed to healing, results indicated that the most severely impaired group of family members had financial difficulties. Since study data were cross sectional, we were unable to resolve whether financial difficulties worsened grief outcomes, poorer grief outcomes resulted in greater financial hardships or, more likely, they each affected the other. For example, those who continue to struggle with grief and physical and mental health conditions might find it difficult to maintain employment, resulting in a cascade of negative effects including grief, trauma, poor health, and financial instability.

Also resonating with victims’ accounts of their experiences since 9/11 are the study’s findings that other negative, pre- and post-9/11 life events were associated with increased risk of meeting threshold for depression, grief, generalized anxiety, and PTSD.  Many family members have reported experiencing earlier traumas, subsequent losses or additional responsibilities, such as caring for elderly parents with chronic illnesses since 9/11.  These cumulative challenges complicate one’s ability to recover, as one parent whose adult child died on 9/11, lost another child in a car accident and later lost their spouse due to a sudden illness reflected - “I’ll never be the same.  I’ll never get over it.  My pain is still sitting inside of my heart.”

Despite the traumatic loss of their loved one on 9/11, it is reassuring that the majority of people who participated in the study appear to be doing well, are healthy and moving forward with their lives. Consistent with what has been reported to VOICES staff, many 9/11 family members describe post traumatic growth, indicating that despite the loss they suffered they were able to create new meaning in their lives. Healthier bereavement outcomes are often described as related to active participation in memorializing their loved ones, paying it forward by volunteering to assist others, and advocating for relevant issues and policy changes. Many families established foundations to commemorate their deceased loved ones while benefitting others, so the memory of their loved one lives on.  Other family members have erected memorials or planned commemorative events to honor the 9/11 victims. One sibling reflected, “I wanted to be sure that my brother and the others who died will be remembered for future generations.”  Many family members transformed their personal loss into volunteering to help others.  The spouse of a victim who now provides support to grieving families commented, “One thing I learned while training to be a grief counselor is that you can only take someone as far as you’ve come yourself. It is in giving back that you receive.” Some survivors became victims’ advocates and dedicated their efforts to advocating for change on a myriad of issues.  A mother who became a 9/11 advocate commented, “We wanted a full investigation into the failures on 9/11, to be sure the government was taking the necessary steps to protect our citizens.  I didn’t want another family to suffer the loss we suffered.  I didn’t want another mother to walk in my shoes.” These activities provided an opportunity for family members to channel their grief and play an important and active role in honoring the lives of their loved ones, while using their personal experience to help others and make the world a safer place.

In summary, the research findings in Patterns of Comorbidity Among Bereaved Family Members Fourteen Years after the September 11th Terrorist Attacks are consistent with the personal stories we have heard in our day-to-day work at Voices of September 11th.  The ongoing experiences of 9/11 victims’ families provide critical and evolving insights into their struggles, as well as how to construct best practices to reduce risk factors that lead to negative outcomes. Acts of terrorism and mass violence occur with great frequency within the United States and globally, impacting thousands of individuals and families each year.  In order to adequately respond to the needs of victims’ families, it is critical to understand the positive factors that promote healing and long-term recovery, as well as risk factors that contribute to negative outcomes many years after the sudden loss of a loved one in an act of terrorism.

Partnerships between community organizations and scientific institutions, such as the collaboration in this study, provide rich opportunities for bridging the gap between science and practice.  It is our hope that the findings from this study will provide important lessons for practitioners and policy makers, influencing the development and delivery of support services to promote healing and resilience in the lives of those impacted by terrorism, even many years later.        

References

Aronson, J.D., (2016). Who owns the dead? The science and politics of death at ground zero. Cambridge, MA: Harvard University Press.

Reference Article:

Cozza, S. J., Fisher, J. E., Fetchet, M. A., Chen, S., Zhou, J., Fullerton, C. S., & Ursano, R. J. (2019). Patterns of comorbidity among bereaved family members 14 years after the September 11th, 2001, terrorist attacks. Journal of Traumatic Stress. Available online ahead of print. doi: 10.1002/jts.22407
 
Note: The authors’ expressed opinions do not necessarily reflect those of the Uniformed Services University or the Department of Defense.

Questions for Discussion:

  1. How do we currently engage bereaved 9/11 family members in order to identify those who continue to struggle with grief-related problems, who require social support and/or evidence-based treatments? Are new outreach efforts into the 9/11 community required?
  2. How can community leaders, community support programs and clinical service providers more effectively collaborate to better address various risk factors (e.g., financial instability, employment instability, lack of social support, negative post-event life events) that impact 9/11 bereaved family member physical and mental health outcomes?

About the Authors:

Mary A. Fetchet, LCSW is a clinical social worker and the co-founder of Voices of September 11th, an organization that helps families heal after tragedy. Ms. Fetchet is a strong advocate for the rights of victim’s families and survivors, and public policy reforms to make the country safer.
 
Joscelyn E. Fisher, PhD is a Research Assistant Professor at the Uniformed Services University as well as Project Director/Research Psychologist in the Child and Family Program at the Center for the Study of Traumatic Stress. Dr. Fisher is working on several projects that investigate the impact of exposure to traumatic events (including bereavement, child maltreatment and combat injury) on mental health outcomes.
 
Stephen J. Cozza, MD is Professor of Psychiatry at the Uniformed Services University where he serves as Associate Director, Center for the Study of Traumatic Stress. Dr. Cozza’s professional interests are in the areas of clinical and community response to trauma and the impact of military related stressors (deployment, combat injury, illness and death), as well as other traumatic exposures on adults and children within families.
 
 

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