Healthcare providers caring for patients undergoing intensive oncologic care may experience challenges related to psychosocial barriers to care, which can negatively affect access to treatment and health outcomes. Recognizing and responding to these barriers caused by the experience of adversity and trauma are important considerations to ensure safe and effective patient care. The objective of this article is to demonstrate how a trauma-informed approach can be used to develop supportive interventions. Consideration of this approach not only ensures high-quality patient care, but also promotes health equity by navigating the difficult barriers that may have prevented access to care.
About 10%–20% of overall health outcomes are attributed to medical care, so healthcare professionals need to recognize the contribution of socioeconomic and environmental factors, as well as personal experiences that affect health-related behaviors, accounting for the remaining 80%–90% (Hood et al., 2016). These factors are more broadly referred to as social determinants of health (SDOH) and include all aspects of one’s social and physical environment, ranging from the level of access to economic opportunity to quality health care and community resources (U.S. Department of Health and Human Services, 2021). As many as 70% of cancer-related deaths occur in economically disadvantaged communities (World Health Organization, 2021); therefore, when SDOH are not optimized, the risk for adverse effects and cancer mortality increases (Flannelly et al., 2020; Pinheiro et al., 2021).
An important component of SDOH is health-related behavior, which is shaped by the effects of childhood experiences, as demonstrated in a landmark study on adverse childhood experiences (Felitti et al., 1998). Traumatic events occurring during childhood, known as adverse childhood experiences, can undermine a person’s sense of safety, stability, and bonding, even into adulthood (Centers for Disease Control and Prevention [CDC], 2021). These experiences may include maternal depression, mental illness, any form of emotional or physical abuse, divorce, incarceration, and neglect. These experiences often stem from adverse community environments, such as discrimination, poverty, violence, poor housing quality or homelessness, or the lack of opportunity for economic and social mobility (Ellis & Dietz, 2017).
About 61% of adults have reported having at least one type of adverse childhood experience, and almost one in six has been exposed to four or more of these events (CDC, 2021). The relationship between SDOH and adverse childhood experiences illustrates the interconnectedness of adversity within a community and traumatic exposures to an individual. These elements, in tandem, affect individuals’ potential to grow and thrive (Ellis & Dietz, 2017). Healthcare professionals need to understand how this can affect patients’ response to a treatment presentation, engagement, and overall outcomes; the use of a trauma-informed care approach can help to address these challenges.
Trauma-informed care is based on the understanding that patients may have suffered adverse and traumatic experiences (Menschner & Maul, 2016). Optimal care for patients requires an all-encompassing trauma-informed approach, not just a series of clinical interventions. The Substance Abuse and Mental Health Services Administration (SAMHSA, 2014) developed a trauma-informed approach as a framework to connect the context in which trauma is addressed and how treatments are developed. The approach has four assumptions and six key principles. The assumptions, or “Four R’s,” are as follows:
• Realize the extensive impact of trauma, and understand the physical, emotional, and social effects.
• Recognize the signs of trauma and exposure to traumatic events.
• Respond by integrating knowledge about trauma into practice, and apply the principles of a trauma-informed approach to all aspects of care.
• Resist retraumatization through the prevention and avoidance of stressful or toxic situations and environments that may trigger or exacerbate painful memories and traumatic histories.
Successful management of oncologic care requires an early psychosocial assessment to ensure access to effective support and interventions to mitigate potential risks.
According to SAMHSA (2014), the following principles are fundamental to the trauma-informed approach and can be applicable to multiple settings:
• Safety: Patients feel physically and psychologically safe.
• Trustworthiness and transparency: Decisions are transparent with a goal of building and maintaining trust.
• Peer support: Use stories and lived experiences to establish safety and hope, build trust, and enhance collaboration.
• Collaboration and mutuality: Share in decision-making.
• Empowerment, voice, and choice: Strengths and experiences are recognized.
• Cultural, historical, and gender issues: Offer services that are responsive to the individual’s needs.
These six principles build an ideal framework for healthcare providers to develop more trusting relationships and improve communication with patients in response to the impact of psychosocial barriers, which can optimize treatment outcomes.
The following case study addresses psychosocial barriers to care and limited access to supportive services required for oncology care. It demonstrates how the trauma-informed approach was used to realize, recognize, and respond to the patient’s healthcare needs and account for any trauma they may have experienced.
M.J. is a 23-year-old woman who was recently diagnosed with acute myeloid leukemia. She presented to a large, comprehensive cancer center in New York, New York, to establish care and later for an evaluation of hematopoietic stem cell transplantation (HSCT) for the treatment of a high-risk hematologic malignancy with curative intent. In preliminary conversations with her primary oncologist, M.J. disclosed experiencing housing insecurity throughout her life, and that she had spent the last three years in various shelter placements throughout the city. This instability was mutually identified as a potential barrier to care. Her primary oncologist realized the risks of inadequate access to permanent housing (SDOH) and the compounding experience of homelessness (adverse childhood experience) on potential treatment outcomes. As such, the HSCT team was requested to participate in a trauma-informed approach as an early intervention to maximize support and ensure continuity across the continuum of care.
During an anticipatory planning conversation for HSCT, which included discussions regarding the risk of adverse and potentially fatal effects, M.J. verbalized her understanding and said, “There are worse things than dying.” It was then that M.J. detailed her experiences with lifelong housing insecurity and resource scarcity, stemming from a history of significant and interpersonal traumas. As a self-determined harm reduction strategy, she minimized close relationships throughout her life, which affected her access to the caregiver support necessary for HSCT recipients.
Given the awareness of M.J.’s traumas and their effects, the value of trauma-informed care became imperative. Therefore, an interprofessional team was developed to respond and implement the key principles from the trauma-informed approach (SAMHSA, 2014).
The interprofessional team, comprised of physicians, social workers, case managers, pharmacists, registered dietitians, advanced practice providers, and clinical nurses, maximized collaboration in the shared goal of prioritizing patient safety and developing a sense of trust. To attain those outcomes, frequent patient follow-ups and interprofessional case conferences were implemented to discuss the complex medical and psychosocial acuity of M.J.’s care. By adapting organizational practices, the team created a safe environment and engendered trust by working to avoid retraumatization. M.J. expressed feeling cared for, both physically and emotionally, which fostered active engagement in her own care.
To cultivate shared decision-making, the care team and M.J. discussed her barriers to care resulting from inadequate housing and caregiver availability, and explored innovative solutions to ensure the safe, effective HSCT care required. Despite extensive efforts by M.J., the interprofessional team, and available institutional and community resources, permanent housing and full-time caregiver support were not secured. Empowered by the development of mutuality with her care team, M.J. suggested she return to shelter housing. Valuing self-determination, the team supported her choice and the resulting care plan included provisions for safe lodging and caregiver support.
The interprofessional team collaborated with the shelter staff to secure a private room adjacent to the administrative offices, so the staff, including the 24-hour security guard, could actively monitor M.J.’s physical condition and well-being (at least three times per day). M.J. was maintained as an inpatient in the hospital until she was clinically safe to be discharged to the shelter. The team scheduled daily follow-up care for several weeks after hospitalization to monitor and respond to potential adverse events. In addition, private car services were arranged through social services to avoid public transportation, given her immunocompromised state.
Because M.J. was staying in the shelter, her medication access and nutrition required unique consideration. As a result, a local pharmacy delivered M.J.’s specialty medications to the shelter, where they were stored safely until they were hand delivered to M.J. by shelter staff. Because communal dining could pose a risk to a severely immunocompromised post-HSCT recipient, a dietitian worked to acquire institutional funding for meals during follow-up visits. With the support of the shelter staff and community partnerships, M.J. was provided with a mini refrigerator, cooking appliances, and a food stipend to prepare her own meals until it was deemed safe enough to participate in communal dining.
In acknowledging peer support as a principle of the trauma-informed approach, M.J. was offered and agreed to connect with a patient who shared similar life experiences and overcame similar transplantation-related barriers. Cultural, historic, and gender considerations were recognized to ensure appropriateness of the connection. This peer support provided M.J. with meaningful reassurance and encouragement, which helped alleviate her fears while instilling hope throughout her treatment. Her peer also validated and normalized her concerns, which gave M.J. the confidence to engage in collaborative shared decision-making with her medical team.
Patients undergoing oncology treatment may experience psychosocial barriers that limit their access to supportive services. By applying their care through a framework, such as a trauma-informed approach, nurses can realize, recognize, and respond to patient care needs. Because patients recognize nurses to be among the most trusted professions in health care (Saad, 2021), nurses play a vital role in facilitating patients’ sense of safety and trust, which are important when working with a vulnerable population. In addition, as part of the interprofessional team, oncology nurses can collaborate in the exploration and implementation of supportive care services to ensure safe and effective patient care throughout treatment. Although some of the interventions described in the case study may not be feasible because of differences in resource availability or geographic locations, these efforts validate the importance of understanding and catering to the effects of adversity and trauma to improve patients’ experiences and healthcare outcomes.
This case study illuminates the impact of SDOH and adverse childhood experiences on the availability of supportive services required for intensive oncologic care, such as HSCT. The trauma-informed approach is imperative to use in complex situations, requiring interprofessional collaboration to extend the focus beyond the clinical environment and adapt to patients’ physical and psychosocial needs. By adopting trauma-informed care, healthcare providers can more effectively mitigate psychosocial barriers with the potential to improve healthcare outcomes and promote health equity.
Marci L. Andrejko, DNP, APRN, FNP-C, is a family nurse practitioner and Angela Katrichis, LCSW-R, APHSW-C, is a clinical social worker, both at Memorial Sloan Kettering Cancer Center in New York, NY. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. Andrejko can be reached at firstname.lastname@example.org, with copy to CJONEditor@ons.org.
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