Barbara Joyce Bedney, Ph.D., M.S.W., Leah Bergen Miller, B.A, and Shelley Rood Wernick, M.B.A.
The Jewish Federations of North America Center for Advancing Holocaust Survivor Care
It is currently estimated that close to 90% of American adults 18 and over have had at least one traumatic event in their lifetimes (Kilpatrick et al., 2013). Traumatic events are experienced as “threats to survival and self-preservation” (Janoff-Bulman, 1992) and include sexual and physical abuse, accidents, disasters, war, domestic violence, and terrorism.
In 1998, the landmark Adverse Childhood Experiences (ACEs) study (Fellitti et al., 1998) established a ‘strong and cumulative’ link between trauma in childhood and poor health outcomes in adulthood. We now know that trauma can lead to lasting changes in the brain that can result in constant fear, hypervigilance, and difficulties sleeping, concentrating, thinking clearly, and managing emotions in trauma victims (Sweeton, 2017). Trauma and post-traumatic stress disorder are associated with an increased risk for cardiovascular and lung disease; fibromyalgia, chronic pain, and fatigue; gastrointestinal disorders; musculoskeletal disorders; and endocrine disorders (D’Andrea et al., 2011; DeOliviera-Solis et al., 2017; Jankowski, 2016; Kelsch and Kelsch, 2014; McFarlane, 2010; Rouxel et al., 2017; Wyatt et al., 2002). Trauma is an “almost universal experience” of people with mental health disorders (SAMHSA, 2014).
In 2015, the Administration for Community Living/Administration on Aging (ACL/AoA) awarded The Jewish Federations of North America (JFNA) a grant to develop and disseminate innovations in person-centered, trauma-informed (PCTI) care for Holocaust survivors. Person-centered, trauma-informed care is a holistic approach to service provision that infuses knowledge about the prevalence and impact of trauma into agency programs, policies, procedures, and operational spaces to promote the safety and well-being of clients, visitors, and staff (Eisinger and Bedney, 2018). PCTI care combines the core principles of person-centered care – empowerment and choice – with SAMHSA’s (2014) principles of trauma-informed organizations as those that realize the widespread impact of trauma; recognize the signs and symptoms of trauma in clients, families, staff; respond by fully integrating knowledge about trauma into policies, procedures, and practices; and seek to actively resist re-traumatization. In addition, PCTI programs incorporate the six principles of SAMHSA’s trauma-informed approach: safety; trustworthiness and transparency; peer support and mutual self-help; collaboration and mutuality; empowerment, voice, and choice; and cultural, historical, and gender issues. Trauma informed approaches are the ‘universal precautions’ of the social service world (Hodas, 2006), designed to create a safe environment for everyone based on the assumption that everyone may have experienced a traumatic event in the past, and they are increasingly associated with improved client outcomes and the potential for reduced health and social service costs (Key, 2018; Menschner and Maul, 2016).
To date, JFNA has awarded 84 sub-grants to non-profit organizations to develop innovations in PCTI care for Holocaust survivors, including socialization, health and wellness, mental health, cognitive support, and family caregiver support programs. In addition, a number of sub-grantees have trained professionals (including physicians, nurses, dentists, lawyers, social workers, and home health workers), volunteers, and family caregivers on how to provide PCTI care. Over 13,000 Holocaust survivors and over 2,300 family caregivers have received services, and over 9,400 professionals have been trained in PCTI care. Overall, survivors report feeling less anxious and depressed, family caregivers report being more capable of caring for themselves and their family members, and professionals report feeling more knowledgeable about PCTI care and how to implement it as a result of participating in these JFNA-funded programs. This article provides examples of how these programs are implemented using SAMHSA principles, and provides suggestions about how these models and principles can be adapted for other older populations.
At the onset, however, it is important to note that what makes these programs unique and effective is not just their focus on trauma, or on Holocaust survivors, or even on SAMHSA’s principles, but their focus on how trauma impacts the aging process and, consequently, has implications for service delivery for older adults.
Older Adults and Trauma
Between 70% and 90% of Americans 65 and older have been exposed to at least one potentially traumatic event in their lifetimes (in Kaiser et al., 2017). However, comparatively little work has been done on trauma in older adults compared to younger populations. As a result, trauma exposure in older adults is a ‘silent problem’ or ‘hidden variable’ often neglected by health professionals (in Cook, Similoa, and Brown). Health care providers often don’t recognize the signs or symptoms of trauma in older adults, and many don’t know how to assess for it or provide treatment for it (McCarthy and Cook, 2018). Older people with histories of trauma are often misdiagnosed, and receive inappropriate treatments and medications for these conditions (Key, 2018; McCarthy and Cook, 2018). The role changes and functional losses associated with aging, including health problems and the loss of loved ones, can also re-activate traumatic stress in older adults who had previously been coping well (Davison et al., 2016; Kaiser et al., 2017; Ladson and Bienenfeld, 2007; Paratz and Katz, 2011).
For service providers who work with older adults, this means appreciating and understanding the loss of control and ruptured sense of safety that are the core experiences of trauma, and knowing that the terror associated with those losses can be re-ignited in their clients at any time. It means understanding that for Holocaust survivors, showers and medical uniforms can trigger an acute onset of terror and anxiety. It means understanding that an older adult living in low-income housing who grew up in an abusive home may become anxious or withdrawn by the sound of people arguing or images of violence; that an older woman who was raped in her 20s may still fear dimly lit places; and that an older lesbian may be afraid to discuss her sexual health with a physician due to past traumatic experiences of discrimination and violence. And it means being able to sensitively, empathetically, and calmly respond to clients experiencing these heightened emotions and behaviors when they occur.
PCTI programs for Holocaust survivors and other older adults take all of these things into consideration. They create operational spaces that promote a sense of physical and emotional safety among clients, visitors, volunteers. They train their staff on the prevalence, impact and symptoms associated with a history of trauma among older adults, and on how they can prevent re-traumatization and re-establish a sense of safety as soon as possible should it occur among their clients. And they learn how to prevent and treat the symptoms of vicarious or secondary trauma that often occur from working with traumatized clients and that can lead to the burnout and staff turnover that can be so disruptive to clients and costly to organizations. In a previous article (Eisinger and Bedney, 2018), we addressed the issue of training staff on PCTI care. In this article, we focus on the implementation of PCTI programs themselves.
Implementing PCTI Care for Holocaust Survivors
At its core, providing trauma-informed care means creating a safe and welcoming environment for everyone. “Throughout the organization, staff and the people they serve feel physically and psychologically safe; the physical setting is safe and interpersonal interactions promote a sense of safety.” (SAMHSA, 2014).
PCTI programs and services for Holocaust survivors go out of their way to make all participants feel welcome, safe, and valued. Agency spaces are well lit, and disturbing noises are eliminated. Clients are often personally invited to events and are reminded multiple times of upcoming events through newsletters, flyers, and personal phone calls. Staff are present at events to greet and welcome clients, and they ask them afterwards how the event went for them and what could be done to make similar events better next time. Name tags are often printed and handed out as survivors arrive for events, another indicator that they are welcome and that the agency is glad they are there. In some agencies art work created by survivors is hung on the walls, helping to create a welcoming environment. Care packages and party favors are often given as mementos of the good experience. Staff try to make transportation available for every event, so everyone can attend and everyone knows that the agency wants them there. They also try to remove barriers to participation by inviting aides to attend events with survivor clients. Outreach is conducted in the survivor’s own language whenever possible. Staff will often try to introduce survivors to each other, particularly those who live near each other, to help create linkages outside of the agency and agency events.
A second SAMHSA principle of trauma-informed care is trustworthiness and transparency. “Organizational operations and decisions are conducted with transparency with the goal of building and maintaining trust with clients and family members, among staff, and others involved in the organization” (SAMHSA, 2014). PCTI programs for Holocaust survivors help create open and trusting environments by not rushing survivors into anything they are not ready to participate or engage in. Having mental health professionals embedded in socialization events, for example, is a way for staff to earn the trust and develop relationships with survivors. Survivors start to feel comfortable sharing their concerns. Staff get to know the clients socially, and they learn about issues that may not be on an intake or that a survivor wouldn’t think to discuss with their case manager (e.g., a best friend passed away, new issues with dentures, etc.). Staff also have the opportunity to notice changes in survivors because of the regular contact. After getting to know the mental health professional and the other survivors who regularly attend socialization groups, it is often easier to start one-on-one counseling, group therapy, or support groups. Staff are also transparent about what each service will include, such as how long it will last, where it will be, and what will take place at the event. It is critical that there are no surprises, and that the atmosphere is welcoming and safe.
Peer support is a third critical component of trauma informed care – “peer support and mutual self-help are key vehicles for establishing safety and hope, building trust, enhancing collaboration, and utilizing stories to promote recovery and healing.” (SAMHSA, 2014). PCTI programs for Holocaust survivors often bring survivors together in social events. When participating in regular socialization events, many survivors realize they have similar experiences and issues, and conversations flow easier. Many survivors report feeling less isolated as a result of participating in these programs. As the nation grapples with a “loneliness epidemic” among older adults (HRSA, 2019), these programs can be a model for successful social programs.
Collaboration and mutuality is another core principle of SAMHSA’s trauma informed principles. “…importance is placed on partnering and the leveling of power differences between staff and clients and among organizational staff from clerical and housekeeping personnel, to professional staff to administrators, demonstrating that healing happens in relationships and in the meaningful sharing of power and decision-making.” (SAMHSA, 2014). PCTI programs for Holocaust survivors seek to level the playing field by training all staff on PCTI care, from the housekeeping staff to senior administrative personnel. The idea is that anyone and everyone can support and avoid re-traumatizing those who have experienced trauma in the past.
Empowerment and choice are key components of SAMHSA’s principles – “throughout the organization and among clients served, individuals’ strengths and experiences are recognized and built upon. The organization fosters a belief in the primacy of the people served, in resilience, and in the ability of individuals, organizations, and communities to heal and promote recovery from trauma” (SAMHSA, 2014).
PCTI programs for Holocaust survivors empower and give choice to survivors by asking them what services they want to receive, how and when they want to receive them, and what they think is the best thing for them. Survivors participate on advisory committees to express what activities they want to do, where they want to go, and what they want to learn. After events, survivors complete surveys to provide feedback on what they liked and didn’t like, and what they want to see in the future. Survivors are also given the choice of the type of service they want to participate in, whether support groups, group counseling, individual counseling, social programs, wellness programs, or some combination thereof, and whether they want to access these services at home or in the agency. Some survivors volunteer as friendly visitors or to teach technology, which gives them a sense of purpose and confidence. In PCTI programs clients are recognized as experts on different topics, and that they have information to teach and share. Celebrating resilience and accomplishments and using strengths-based approaches can also be empowering.
And finally, trauma informed approaches take cultural, historical, and gender issues into account in all programming. “The organization actively moves past cultural stereotypes and biases (based on race, ethnicity, sexual orientation, age, religion, gender identity, geography, etc.)…leverages the healing value of traditional cultural connections…” (SAMHSA, 2014). PCTI programs for Holocaust survivors help survivors enjoy their culture, foods, songs, and traditions. Food, music, and celebrations are culturally appropriate. Staff often speak the same language as the clients, again, creating a welcoming and culturally sensitive environment. Taking cultural, historical, and gender issues into account also needs to means taking aging issues into account, and creating an environment where older adults are respected, and their wisdom, strength, resilience, experience, and ability to mentor the next generation is welcomed, supported, nurtured, and celebrated.
Next Steps: Extending the PCTI Paradigm
Trauma-informed care, and the PCTI paradigm, are powerful tools to help social service providers promote safety, health, and well-being among Holocaust survivors. But their reach may extend well beyond that. Other older populations, including aging veterans, refugees, and LGBTQ individuals, all of whom are likely to have experienced trauma, may also benefit from the sense of safety, comfort, empowerment, and cultural sensitivity created by agencies implementing PCTI programs and principles. At the same time, PCTI strategies may be conducive to helping these populations seek out mental health services in the first place. In their groundbreaking report on the mental health of first responders, Heyman, Dill, and Douglas (2018) highlighted the role of stigma in keeping first responders from accessing the mental health services that can be beneficial to them. Stigma has also been cited as a barrier to mental health service utilization among Holocaust survivors (Kover, 2014; Kennedy, 2012), older adults (Connor et al., 2010; Bor, 2015;), veterans (Lucksted; Campbell et al, 2016), and LGBTQ individuals (Veltman and Chaimowitz, 2014). Implementing PCTI principles outlined in the examples above may be a way to reduce the stigma associated with mental illness and mental health programs. Reaching out to and welcoming individuals with mental health concerns to programs and making them feel safe in sharing their concerns, providing transportation and conducting outreach in their own language, and giving them the time and the space to develop trusting relationships with staff can help reduce some of the stigma associated with mental health programs. At the same time, building peer support programs; giving clients the power to exercise voice and choice in their own service delivery options and continuously asking for their feedback; and promoting and celebrating their resilience, skills, and wisdom, and respecting their cultural, historical, and gender backgrounds can all go a long way towards promoting access to mental health services among vulnerable populations.
These examples highlight just some of the ways that PCTI programs developed for Holocaust survivors can be extended and implemented for other populations and other social service issues. It is our hope that the PCTI principles and strategies highlighted here will help raise awareness about the unique needs of older adults with a history of trauma and help service providers implement PCTI programs for Holocaust survivors, and simultaneously act as an inspiration to providers across the country to use the framework to benefit the clients they serve.
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