Apply culturally sensitive, trauma-informed care to reduce stigma and implicit bias.

ROBERT LAMBERT*, a 26-year-old man with hemoglobin S sickle cell disease (HbSS SCD), is admitted to a medical-surgical unit for vaso-occlusive crisis (VOC) after 14 hours in the emergency department (ED). He reports pain intensity of 10/10 and requests his next hydromorphone dose. His nurse hesitates and questions the request, citing the patient’s phone use as inconsistent with what she would expect from a patient in severe pain. The patient tries to explain that he uses the phone as a coping mechanism to manage severe pain.

Mr. Lambert’s clear signs of distress related to an acute VOC complicated by an underlying infection necessitate immediate, aggressive pain management, hydration, and vigilant monitoring for complications. However, delays in care require Emergency Response Team activation and a 5-day intensive care unit stay. This outcome might have been avoided with earlier intervention and recognition of the underlying cause of the VOC.

Implicit bias in this case resulted in care delays and undermined treatment outcomes. Nursing actions that align with institutional protocols and evidence-based guidelines from the American Society of Hematology for managing acute and chronic sickle cell disease pain should include prompt, protocol-based analgesia, acceptance of the patient’s self-report as a reference standard for pain assessment, bias awareness, respectful and nonjudgmental communication, and recognition of the strategies patients may use to manage pain.

McGill and colleagues conducted a cross‑sectional study of adults with sickle cell disease and found that discrimination experienced in healthcare settings was associated with worse pain outcomes, including greater pain severity and pain interference. This relationship was partly mediated by depressive symptoms. These findings underscore the importance of trauma-informed and culturally responsive care. McGill and colleagues emphasize the importance of addressing the mechanisms that link racism-based discrimination in healthcare settings to clinical pain and advancing treatment strategies to improve health outcomes in individuals with SCD.

About SCD

SCD is an autosomal recessive hemoglobinopathy caused by a mutation in the B-globin. In this gene, glutamic acid replaces valine, leading to abnormal hemoglobin S (HbS) production. Under low oxygen or dehydration, HbS polymerizes, distorting red blood cells into rigid, sickle shapes prone to hemolysis, vascular adhesion, and VOC. These cells impair blood flow, cause tissue ischemia, and lead to progressive organ damage, resulting in complications such as stroke, acute chest syndrome, pulmonary hypertension, avascular necrosis, and multiorgan failure.

According to Drahos and colleagues, approximately 7.7 million individuals live with SCD globally, including over 100,000 in the United States and about 14,000 in the United Kingdom. This distribution reflects the selective advantage conferred by the sickle cell trait in regions where malaria is or was endemic, especially parts of sub-Saharan Africa and the Indian subcontinent. Individuals in these regions who are heterozygous carriers (HbAS) have partial protection against severe and fatal Plasmodium falciparum malaria, leading to improved survival in these settings.

VOCs, a hallmark of SCD, are driven by a complex cascade of cellular and molecular events. Hemolysis and oxidative stress lead to the release of damage-associated molecular patterns, which activate endothelial cells, leukocytes, and platelets. This inflammation promotes adhesion between these cells and the vascular endothelium, leading to microvascular obstruction, ischemia, and reperfusion injury, which contribute to tissue and organ damage. Zadeh and colleagues explain that in SCD, the sickled red blood cells, endothelial activation, inflammation, and coagulation system create a perpetuating inflammatory and pro-thrombotic cycle, driving recurrent VOC episodes and organ damage.

Although SCD has significant prevalence and severe clinical consequences, it remains underfunded and disregarded compared to other genetic disorders. Research has shown disparities in clinical infrastructures and poorer outcomes due to a lack of access to comprehensive care for those with SCD. For example, according to Farooq and colleagues and Grismore and colleagues, federal and foundation funding for cystic fibrosis far exceeds that for SCD, despite SCD affecting a larger patient population in the United States. Grismore and colleagues note that little education exists for patients and providers and psychosocial support services remain limited, which further compound health inequities and contribute to care delays, repeated ED visits, and mistrust in the healthcare system.

Implicit bias and SCD

Mulchan and colleagues’ small pilot intervention focused on assisting healthcare providers in recognizing and decreasing implicit bias when treating children with SCD. The study highlights the importance of addressing bias to improve the care experience for individuals with SCD pain.

Marr and colleagues further report how bias and stigma in SCD care can lead to misconceptions that patients exaggerate pain or seek opioids, leading to inadequate treatment. Smeltzer and colleagues suggested that although available evidence doesn’t support increased rates of opioid addiction among individuals with SCD, high addiction risk may remain a common misconception and assumption within clinical practice.

Marr and colleagues note that individuals living with sickle cell disease frequently describe experiences of discrimination and stigma and report prolonged ED wait times for pain relief, which can contribute to dissatisfaction with care.

Thompson and colleagues found that although general education in health professions can help increase clinician awareness of bias, it rarely leads to lasting changes in decision-making or patient care. Goldstein and colleagues and Marr and colleagues suggest that structured approaches, bias awareness training, cultural humility workshops, and trauma-informed care can help clinicians notice and reflect on mistaken beliefs that might affect their practice. Together, these studies highlight that real change likely requires more than just education; it takes intentional, structured learning that encourages reflection and growth.

Sowah and colleagues’ review of SCD-focused scientific literature found that, although person-centered language is becoming more common, stigmatizing terminology remains present in some clinical and academic discourse, highlighting the need for continued advocacy and education. Healthcare providers could create a more supportive environment for people with SCD by focusing on respectful language and reducing stigma. Nursing should use person-first language (for example, “patient with SCD” rather than “SCD patient”) in charting and handoffs, eliminate labels like “drug-seeking,” mirror the patients’ preferred terms (for example, pronoun preferences), and correct stigmatizing phrasing in real time during team communications, such as hand-off reports. For example, if a colleague says, “This patient is drug-seeking again,” a nurse might respond, “Let’s focus on how we can best support their current pain,” modeling neutral, patient-centered language.

Evelyn and colleagues studied nurses’ knowledge of pain mechanisms in sickle cell disease using an online e-learning module that covered pathophysiology and pain management strategies. They found that although nurses’ knowledge improved significantly after the module, these gains didn’t consistently translate into changes in clinical practice. The authors suggest that past experiences and implicit biases may shape how nurses apply knowledge, potentially limiting the impact of education alone. Evelyn and colleagues emphasize that effective education should go beyond teaching mechanisms and include opportunities for nurses to reflect on their attitudes and biases, helping to ensure that knowledge translates into patient-centered care.

Barriers to care

Patients living with SCD face numerous barriers to adequate care. Grismore and colleagues and Smeltzer and colleagues noted that patients with SCD experience significant challenges in accessing adequate care as a result of healthcare providers’ unpreparedness and limited knowledge of SCD, resulting in inconsistent and suboptimal treatment. Smeltzer and colleagues stated that stigma associated with VOC episodes and the use of opioids frequently delays or decreases the quality of pain management. Darby and Grismore, along with their colleagues, highlighted systemic factors such as social determinants of health, racism, and mistrust of the healthcare system as contributing barriers to care.

Darby and colleagues emphasized that social determinants of health significantly affect individuals with SCD, contributing to persistent health disparities and poor outcomes. These determinants include poverty, housing instability, food insecurity, and limited access to healthcare services. Such conditions are strongly associated with lower quality of life, increased mental health burdens, and higher rates of healthcare utilization.

Grismore and colleagues stated that systemic racism and discrimination amplify these challenges, particularly for Black and Hispanic populations, which are disproportionately affected by SCD. Improving the health and well-being of these vulnerable patient populations requires recognition of and responsiveness to these social factors.

Johnson and colleagues stated that SCD also imposes a substantial economic and caregiving burden on patients and their families. They estimated that lifetime medical costs exceed $1.7 million per patient, with out-of-pocket expenses averaging $44,000 over the lifespan of a nonelderly adult.

Clinically, SCD is associated with significant morbidity and mortality, frequent hospitalizations, and complications such as VOC. As noted by Johnson and colleagues, these health burdens disproportionately impact racial and ethnic minority groups, particularly Black and Hispanic communities. In a pilot study by Lanzkron and colleagues, patient-reported outcomes consistently showed that chronic pain, fatigue, and other complications deeply affect an individual’s quality of life, highlighting the need for appropriate, consistent, comprehensive care.

Culturally sensitive care

Vandecasteele and colleagues explored general practitioners’ perspectives on delivering culturally sensitive care. They described culturally sensitive care as a dynamic, relational process rooted in empathy, active listening, and shared decision-making. The authors identify three approaches among providers: genuinely sensitive, surface-level sensitive, and perceiving diversity as a threat, highlighting how attitudes shape care delivery. Barriers such as language differences, time constraints, and lack of training can hinder effective communication and adaptation to patients’ cultural needs. Vandecasteele and colleagues’ study concludes that promoting equitable, culturally responsive healthcare practices requires systemic support and institutional reforms. (See Approaches to culturally sensitive care.)

Evidence from Druye and colleagues’ review indicates that healthcare professionals frequently lack knowledge and have variable attitudes toward people with SCD. The review also identifies gaps in pain assessment and management and summarizes literature showing that many providers, particularly in emergency settings, hold negative attitudes and misperceptions regarding SCD pain. All these findings highlight the importance of culturally informed, empathetic communication, ongoing education, and systemic change to ensure the application of care that positively impacts people living with SCD.

From a trauma-informed care and culturally responsive nursing perspective, a practical roadmap for reducing systemic barriers in SCD care includes the consistent use of easily accessible standardized pain protocols paired with individualized patient pain plans that enable implementation in real time. The American Society of Hematology’s 2020 guidelines support rapid pain assessment, administration of analgesia within 1 hour of ED arrival, frequent reassessment using dosing based on the patient’s prior therapy, and using patient-specific plans rather than subjective interpretations. Embedding these processes into everyday care helps reduce delays, improve consistency, and support equitable, trust-centered care.

Trauma-informed care

Goddard and colleagues describe trauma-informed care in nursing as an approach that recognizes the widespread impact of trauma and integrates this understanding into clinical practice. It promotes principles such as safety, trustworthiness, peer support, collaboration, empowerment, and cultural sensitivity. Central to the trauma-informed approach are the Substance Abuse and Mental Health Services Administration’s Four Rs (realization, recognition, response, and resistance). For example, Goddard and colleagues suggest that rather than asking, “What is wrong with you?” trauma-informed care reframes the question to “What happened to you?” This approach helps to foster compassion, validates the patients’ experiences, and enhances engagement. (See Six principles and four Rs.)

In the context of adults with SCD, Grismore and colleagues’ qualitative descriptive study emphasized the barriers patients frequently encounter, including dismissive attitudes, lack of transparency, and limited emotional safety in clinical interactions, all of which exacerbate existing barriers to care. By prioritizing clear communication, shared decision-making, and culturally responsive practices, providers can reduce stigma, validate lived experiences, and enhance safety and trust. Peer support and collaborative care planning further empower patients to advocate for their needs, particularly in high-stakes settings like EDs. Together, these principles create a foundation for equitable, respectful care that acknowledges the impact of trauma and actively works to prevent re-traumatization.

Goldstein and colleagues suggest applying trauma-informed care by creating safe, supportive environments, providing empathetic communication, involving patients in decision-making, and remaining mindful of cultural and gender considerations. Ross and colleagues also reported that, despite widespread emphasis on trauma-informed education, many providers lack confidence in applying these principles in practice, indicating a need for structured, practice-focused education.

For individuals living with SCD, trauma-informed care serves as a critical component of comprehensive healthcare, especially given the complex interplay of medical, psychological, and social factors that influence their care journey. Grismore and colleagues noted that people living with SCD not only suffer from severe recurrent pain and frequent hospitalizations but also manage discrimination and stigma while in healthcare settings, which, in turn, can create psychological stress. Goldstein and colleagues suggest that trauma-informed care can improve outcomes by validating pain experiences, reducing stigma, and developing therapeutic relationships through trust.

In addition to applying clinical knowledge and evidence-based practice to deliver safe and effective care, nurses also serve as advocates, educators, and frequently the first source of emotional support for patients and their families. By integrating trauma-informed care into their practice, they move beyond treating disease to honoring the whole person. This approach reinforces patients’ dignity and reflects the compassionate core of nursing.

However, education alone isn’t enough. Nurses can apply these principles in real-world encounters while learning to feel comfortable with the techniques, just like any other skill. For example, the nurse caring for Mr. Lambert could have responded, “I hear that your VOC is severe, and you need more pain relief.” This response acknowledges the patient’s pain, and it also builds trust and reduces feelings of stigma.

Patient education as a healing tool

Patient education is more than an add-on in nursing; it’s a vital component of nursing practice and can play a meaningful role in supporting individuals living with SCD and helping them better understand and manage their condition. With this understanding, patients can learn practical management strategies, gain confidence, feel more in control, and make informed decisions on their own behalf. Druye and colleagues’ scoping review showed that individualized self-management support, including education and structured interventions, empowers those in developing countries with SCD to manage their disease more effectively and improve their overall well-being.

Edge shared the results of an implemented SCD post-discharge program, which focused education on supporting individuals, understanding their disease, teaching about pain management and self-management, and ensuring consistent care. These interventions led to a 22% reduction in 30-day readmission, decreased length of stay, and a 17% reduction in the use of emergency services and inpatient encounters. The results demonstrate the impact of nurse-involved, patient-centered education and care coordination that focuses on transition of care aimed at reducing avoidable acute care use.

Become an advocate for change

Beyond the bedside, nurses occupy a powerful position to advocate for systemic improvements in SCD care. This advocacy includes championing the development and implementation of SCD-specific, evidence-based protocols in EDs and inpatient units that ensure timely pain management, equitable treatment, and consistent standards of care. Nurses also can promote ongoing interprofessional education that addresses the complex needs of individuals with SCD, including training in implicit bias, trauma-informed care, and culturally responsive communication.

Advocacy doesn’t always require large-scale initiatives; it frequently begins with everyday actions, such as speaking up when a patient’s pain is dismissed, distributing updated clinical guidelines, or encouraging conversations around health equity and racism in medicine. As both care providers and agents of change, nurses can help reshape a healthcare culture where patients with SCD are heard, believed, and respected.

Disrupt the pattern

SCD pain extends beyond a clinical symptom; it’s a constant and unseen challenge that many individuals navigate daily without the recognition or relief they need. For those living with SCD, each VOC represents not only a physical emergency but also a profound emotional experience shaped by cumulative encounters with a healthcare system that too frequently questions their credibility and minimizes their suffering. The pain patients experience can prove intense and unpredictable. However, when seeking relief, primarily through opioid medication, many patients encounter hesitation rather than support.

In a mixed-method study exploring nurses and nursing assistants’ attitudes and beliefs toward individuals living with SCD, Reich and colleagues found that patients encountered persistent communication barriers, including providers who held misconceptions related to pain management and racialized assumptions that prevented effective treatment. These factors contribute to inequities in care and the need for culturally sensitive approaches.

Nurses can disrupt this pattern. By listening attentively, validating patients’ experiences, and initiating prompt, adequate pain management, nurses do more than address symptoms; they also help restore dignity and trust. A single moment of belief and compassion, such as choosing to listen rather than question, can dramatically alter the trajectory of a patient’s care. Nursing alone can’t cure SCD, but it can profoundly influence how patients experience it.

Kathy Burns is a classical hematology clinical nurse specialist in Columbus, Ohio.

American Nurse Journal. 2026; 21(5). Doi: 10.51256/ANJ052626

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Key words: sickle cell disease, stigma, vaso-occlusive crisis, trauma-informed care