Introduction
In the current society where equality is the ultimate demonstration of the concept of democracy, the issue of disparities in pain management and treatment in the health system pose a significant social and health concern. It is entirely possible that the subjective nature of pain and the extensive reliance on patent’s reports of their own experiences may fuel the perceptions and attitudes of clinicians towards pain. Since a medical provider perception and attitude influences diagnosis and subsequently the treatment option, it is essential to investigate the nature of medical providers’ attitudes and their ability to deliver unbiased care. Patients who have sickle cell disease often seek care in the emergency department as a result of pain associated with vaso-occlusive crises. Due to a lack of an objective measure of the level of pain in patients, the management interventions often rely on clinicians’ perception and attitudes related to pain. The paper asserts that disparities such as racial and ethnic disparities influence medical providers’ attitudes which serve as a barrier to the effective delivery of care to patients with sickle cell disease.
Sickle Cell Disease
Prevalence and Occurrence
Sickle cell disease is a significant global health problem. Research indicates that on an annual basis, more than 300,000 children across the globe are born with sickle cell a condition medically referred to as homozygosis (Piel, Steinberg, & Ress, 2017). Statistics indicate that the disease is particularly prevalent in Sub-Saharan Africa, India, the Mediterranean, and the Middle East since the sickle cell trait provides a certain level of protection against Malaria a common disease in these regions. In the USA, sickle cell affects almost 100,000 individuals (Piel, Steinberg, & Ress, 2017). Sickle cell disease is the most common monogenic disorder. It is predicted that the number of patients who have sickle cell disease is likely to increase in the next decade both in the high-income and low-income countries across the globe.
In high-income countries such as the USA, the increase of sickle cell patients is attributed to the rise in life expectancy of individuals suffering from the disease due to high-technology medical interventions such as newborn screening, hydroxyurea treatment and primary strove prevention among others. Over the past three decades, the life expectancy of individuals suffering from sickle cell has improved significantly with the infant mortality rates concurring with those of the general population. However, despite the significant and evident improvement in medical interventions associated with sickle cell, individuals suffering from the disease have a reduced life expectancy of more than three decades and the quality of life is often reduced due to the health effects associated (Freiermuth, et al., 2014)with the disease (Piel, Steinberg, & Ress, 2017). Undeniably, the cost of care associated with sickle cell remains extremely high indicating only the privileged individuals enjoy the full benefits of the progress the contemporary society has made regarding the delivery of care in sickle cell. In low-income countries, the expected increase in individuals who have sickle cell disease is attributed to the fact that there has been an apparent decrease in infant mortality rates over the past twenty years. Therefore, the majority of the infants born with the disease survive to adulthood and often progress to have children with the same condition.
Pathophysiology
Sickle cell is a multisystem disorder that occurs due to a single gene mutation. The disease can be inherited from both parents with the homozygosis for the Hbs gene or from a single parent along with hemoglobin such as the hemoglobin C (Ilesanmi, 2014). Sickle cell is essentially a chronic blood disorder that is featured by red blood cells that have an abnormal, rigid sickle shape thus the name sickle cell disease. The term sickle disease encompasses all the genotypes that contain at least one sickle gene in which the hemoglobin S (HbS) makes at least half of the hemoglobin presence. There are several types of sickle cell including sickle cell genotypes and several other hemoglobinopathies in which Hb S is associated with abnormal hemoglobin.
The current treatment interventions associated with sickle cell disease necessitating an understanding of the complexity of the underlying pathophysiology related to the disease. The basic pathophysiology includes complex mechanisms by which the abnormal cells produce severe and systematic effects associated with sickle cell disease. The processes include but are not limited to; sickling process, hemoglobin cyclic polymerization, the production of dense and dehydrated cells, the interaction between the abnormal cells and the activated vascular endothelial cells among others (Ilesanmi, 2014). Sickling process is the primary mechanism associated with the disease, and it encompasses the accelerated intracellular concentration of the Hb S cells. The sickle cells are generally, but they interact with other cells such as the endothelial cells, leukocytes, and platelets. The sickling occurs due to the mutation in the hemoglobin gene (Ontario Provincial Council for Mental and Child Health, 2017). The sickling process results to various severe health issues including inflammatory complications which are associated with vascular endothelium activation including an increase in blood cell-endothelium interactions.
The polymerization of deoxy Hb S is the primary influence in the vaso-occlusive phenomena. The polymerization of the hemoglobin S molecule in the red blood cells upon DE oxygenation results in the red blood cells to change from their usual shape, biconcave to the irregular sickled shape. When re-oxygenation occurs, the red cell initially assumes its standard form, however, after repeated cycles, the cells are damaged permanently. The sickle cell often adheres to the walls of the blood vessels and susceptible to hemolysis (Piel, Steinberg, & Ress, 2017). The deformed cells cause a microcirculatory obstruction which subsequently prevents the normal flow of blood which results to the decrease in the amount of oxygen delivered in the organs and tissues leading to vaso-occlusive crises which are the primary cause of pain.
Another process associated with sickle cell disease is cell heterogeneity. The sickle cells differ in their density while others are deformed since the homeostasis is impaired in some of the cells. Additionally, the amount of fetal hemoglobin varies in concentrations among the sickle cells (Brandow, Farley, & Panepinto, 2015). Primarily, some of the contributing factors to the vaso-occlusive crises include sickled erythrocytes such as the level of polymer formation and cellular damage and the interactions between the sickled cells and the environment such as the association between the sickle cells and endothelial cells.
Clinical Manifestations
Sickle cell disease is linked to various symptoms that are a consequence of sickling and ischemia that often results in deprivation of oxygen. The repeated occurrence of ischemia results to issues in the spleen which increases the patient’s susceptibility to such problems as severe infection and sepsis. Sepsis and infections often are caused by organisms such as Streptococcus pneumonia and Haemophilus influenza (Tran, Gupta, & Gupta, 2017). Previously, these organisms were the primary cause of death among children. However, the development of vaccines against the organisms in addition to interventions such as prophylactic penicillin therapy has reduced infant mortality rates associated with the microorganisms. Another common complication associated with sickle cell disease is stroke which affects almost ten percent of all the children with anemia. However, deaths linked to stroke in sickle cell disease have reduced due to screening in addition to treatment options associated with chronic transfusions. In the event the sickling process affects the lungs, it causes blockage of oxygen to tissue in any part of the body as such resulting to chronic pain.
Two of the most common consequences associated with the vaso-occlusive crisis are pain and damage in the organs. The organs that are most likely to be affected are those characterized by slow blood flow such as the spleen and the bone marrow. Others affected organs are those with limited terminal arterial blood supply including the lungs, the eye, and the head. Some of the most clinical manifestations of sickle cell disease include; pain, acute chest syndrome, cerebrovascular and splenic dysfunction (Tran, Gupta, & Gupta, 2017). The frequency and severity of the occurrence of pain vary. The difference in the individual seriousness and frequency of presence of pain is due to differences in the order and the pattern of gene expression.
Sickle Cell Pain
Painful episodes are common aspects of sickle cell disease. The onset of pain is unpredictable, and the duration varies from a few hours to several days. The pain in sickle cell patients is associated with the increasing need for medical attention, decreased participation in social activities, increased psychological distress. Over the past three decades, a multitude of studies has invested resources and time in addressing the relationship of disease severity and pain coping strategies associated with coping strategies. For instance, in one study involving 72 children between the age of seven and seventeen, on the relationship between pain and pain management techniques, the researchers assert that the core health outcomes in pain management include; health care utilization, reflected in the medical record and psychological adjustment. The coping strategies identified in the study included; negative thinking, passive adherence (Freiermuth et al., 2014). The study concluded that coping strategies encompassed a variety of multiple cognitive and behavioral strategies that are dedicated to managing pain and diverting attention and calming self-statements.
Another research that showcases the relationship between stress and pain in sickle cell patients illustrated that higher pain intensity ratings were associated with greater health care regarding hospital visits, hospitalizations, and physicians visits. The researchers also asserted that intensity ratings of daily stress were significantly associated with pain intensity levels and the decrease in housework and social activities (Freiermuth et al., 2014). Thus, higher levels of stress are linked to higher levels of pain and an increased level of greater functional impairment. Since the variety of the frequency and the severity of pain in sickle cell patients vary, it is evident that effective pain management relies on accurate quantification of the level of pain in the patients.
Treatment
The treatment of sickle cell disease is associated with the frequent need of hospitalization and is recognized as one of the most expensive diseases across the globe. The primary treatment options include transfusions and a drug known as hydroxyurea. Regular blood transfusions are related to various complications including the risk of developing antibodies, reduction of chances of future transfusion, experiencing hemolysis and infections. Hydroxyurea, on the other hand, is a medicine that was approved by the FDA more than five decades ago in 1967 (Clark & Price, 2012). It is commonly administered to prevent pain crises in sickle cell patients. The drug works by several means including increasing the production of fetal hemoglobin which increases the oxygen capacity of the cells and reduces the chances of the sickle cells blocking the blood vessels. Therefore, the drug works to reduce the incidence of acute chest syndrome and the transfusions associated with the disease.
Moreover, by reducing the white blood cells and inflammation in the body, by extension hydroxyurea mitigate the risk of sickle cell crises. However, despite evidence of the effectiveness of the drug, it is not FDA approved to be used in children. Currently, the only curative treatment of sickle cell disease is the bone marrow transplant, which is associated with various risks.
Opioids remain the most common intervention of acute and chronic pain in sickle cell disease. However, since the drugs are required in relatively large doses and longer duration compared to pain management in other conditions, it is necessary to optimize benefits and reduce the adverse effects associated with sickle cell disease. Research indicates that in recent years, many medical providers clear more morphine for patients with sickle cell a factor that increases the required dosage for opioid (Brandow, Farley, & Panepinto, 2015). It is a dilemma to many medical providers whether individuals suffering from sickle self-report the actual level of pain or whether they do so with an ulterior motive medically recognized as “drug seeking” behavior. Statistics indicate since the dawn of the 21st century and 2018, there has been a 300 percent increase in the prescription of opium in the US. The misuse of prescription drugs results in thousands of visits to the emergency department. Considering that shocking level of deaths associated with a drug overdose, it is necessary for medical providers to take a keen interest in the chronic patients’ level of pain to ensure the prescription collaborates pain.
Disparities in Assessment and Treatment of Pain
Racial and ethnic disparities remain prevalent and refractory to change throughout the USA health system. The discrepancies in pain management and treatment are evident in patients suffering from chronic pain illnesses such as sickle cell, therefore resulting in high social and health costs associated with the care of chronically ill persons. It is acknowledged that various psychosocial factors contribute to this problem. First, it is necessary to recognize the complications associated with the assessment of pain in individuals. This is because pain is an inherently subjective entity that often cannot be directly observed (Freiermuth et al., 2014). In many cases, medical providers including nurses are used to and are trained to rely on objective measurements to influence their medical decisions.
However, there are no objective systems applicable in the measurement of pain a factor that limits clinicians’ perceptions and attitudes and subsequently the decisions related to pain. While technological progress has influenced the development of systems such as the neuroimaging technology applicable n the objective measurement of pain, such a technique cannot be realistically applied at the clinical level. Moreover, many of the objective technology developed to measure pain in the past decade often fail to correspond with the reported level of pain from patients. Therefore, the most common means of assessing pain remains the ‘self-reports’ from patients. However, this system of evaluation is imperfect since they are un-dimensional attempts to quantify a multidimensional experience.
Moreover, the self-report mechanism is limited if the patient has linguistic barriers such as a lack of proficient English which illustrated an increase in an individual’s vulnerability to inadequate care. Undeniably, the self-report mechanism is ultimately useless in cases involving patients or individuals with severe cognitive disorders that limit their communication capabilities (Tait & Chibnall, 2014). Further, many medical professions insist that self-report does not assure uncertainties for instance in the event where a patient is exaggerating the symptom.
In acknowledging the inconsistencies associated with the self-report system of pain quantification, it is no surprise that many medical providers often discount the level of pain even when the reported rates are high. Indeed, many medical providers underrate the level of pain due to the central fact that a higher level of pain illustrates high demand to the medical provider and violate the social standards related to stoicism. Research indicates in the event of uncertainty; it is common for the stereotype to occur where the medical provider advantages the individual that fits the positive stereotype, for instance, pro-white in the case of racial discrimination in the assessment of pain (Tait & Chibnall, 2014).
It is recognized at a global level, and particularly in the USA, that the perceptions and attitudes related to pain are influenced by the characteristics of the patients including race and ethnicity, the situation and the experience of the medical provider. The uncertainty associated with the self-report assessment of pain influences considerable ambiguity in the clinician in their evaluation of pain and the most effective treatment option (Tait & Chibnall, 2014). Similar to a projective analysis, the lack of an objective measure of pain illustrates it is likely that the medical providers can project onto patients their opinions, beliefs, and attitudes as such increasing the vulnerability of medical decisions to stereotyping.
Apart from stereotype, medical providers are influenced by cognitive differences in pain perception, the level of empathy and intra-and interindividual factors associated with pain. Majority of previous research on the disparity in pain management in the health system has relied on observational and epidemiological techniques, in recent years controlled investigations have collaborated with the previous indicating there are racial and ethnic disparities that illustrate medical providers often favor a particular race or ethnicity over others.
Ethnic and Racial Attitudes and Perceptions Associated with Sickle cell Pain Management and Treatment
Sickle cell disease is known to cause a variety of health effects that reduce the physical and emotional functionality of the patient. The most common health effect of sickle cell is the severe episodic bouts of pain that are generally acknowledged as the vaso-occlusive crises (Freiermuth et al., 2014). Therefore, the most common treatment intervention for sickle cell patients is pain management. In most cases, the emergency department of health care facilities serves as the most common site of care delivery for patients.
In recent years, many sickle cell disease patients and their providers express their dissatisfaction with the nature and the quality of pain management that is provided to individuals with sickle cell. Since the disease is particularly predominant in the minority population, particularly African-Americans, there is a higher risk of health care disparities in the delivery of care. Individuals with sickle cell disease report that they experience stigmatization from health care providers including nurses when they seek treatment for their pain.
Typically, the care for sickle cell at the hospital level is often sought out after all home remedies and interventions have been exhausted with no evident relief in pain. The individuals who visit the hospital are usually stabilized at the emergency department with oxygen, fluids and pain medication before being discharged. Severe cases are reported in events where there is delayed analgesia which often results in admission for treatment. Regardless of the sector of medical delivery and provision whether the emergency department or in-patient service, nurses are the familiar attendees and care providers of direct clinical services for individuals with sickle cell (Tran, Gupta, & Gupta, 2017). Their interaction and service delivery techniques are essential for pain management, health education and the prevention and mitigation of future sickle cell crises. Indeed, it is a known fact that the responsibilities of a nurse in a healthcare facility extend beyond communicating and delivering general care to include the provision of recommendations that are grounded in their experience and judgment.
However, attitudes, perceptions, and opinions about a specific procedure or disease or symptom many serve as a barrier between a nurse and a patient. Indeed, before enrolling nursing school, many nurses often form negative perceptions about the association between pain and using drugs such as opioids to manage the pain. These attitudes are often grounded in their ethnic background, values, religion and the community as a whole. However, harboring preconceived and inaccurate notions about pain often results in imprecise assessment and treatment of pain.
As mentioned, there is no objective measurement of pain. Therefore, the pain management process is difficult of all parties involved. Nurses to no small extent rely on their patients’ subjective description of pain to form a diagnosis which subsequently guides the assessment and treatment options. One common mantra of pain that has existed from the second half of the 20th century is ‘pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.’ Individuals suffering from sickle cell often report being stigmatized and sometimes discriminated against by healthcare providers grounded on their race and their ethnic backgrounds depending on the nurses’ preconceived opinions on the association between pain and drug seeking behaviors of individuals from particular races.
On one side of the spectra, it is the acknowledgment of the health effects associated with vaso-occlusion the case of pain in individuals with sickle cell disease. Vaso-occlusion is linked to various complications including infections, acute chest syndrome, renal dysfunction, cholelithiasis among others. Additionally, vaso-occlusion is associated with increased pain episodes that increase the risk of death. As such, it is evident that timely and effective assessment and treatment of pain is imperative (Mathur, Richeson, Paice, Muzyka, & Chiao, 2014). All nurses are aware of these particular consequences and their effects on the quality of care and the quality of life of the sickle patient. However, on the other hand of the spectra, is the evidence across the US that indicates thousands of individuals overdose from prescription drugs on an annual basis, a fact that influences formed opinions of individuals seeking opioids as drug seekers. Many nurses are reluctant to administer high dosages of opioids to patients reporting high levels of pain since they believe in a way that they are enabling the individual’s addiction. This particular opinion is collaborated by research that asserts either sickle cell disease patients have a low pain threshold, or they are incredibly dependent on pain medication.
Therefore, the two conflicting opinions often create a position of uncertainty in nurses in their efforts to deliver care. In the event of doubt in the delivery of care, many health care providers often borrow from their personal beliefs and attitudes towards a particular procedure. For instance, research indicates that nurses who are younger the term young encompassing individuals under forty years, who have less education, lower than the master’s level, and have limited experience which is lower than ten years are more likely to believe that there is an element of drug addiction in efforts of managing pain in sickle patients (Mathur, Richeson, Paice, Muzyka, & Chiao, 2014). The research indicates these nurses often report that unlike cancer and post-operation patients who appear to need the pain-relieving medication, sickle cell patients seem to be healthy.
Pain associated with sickle cell disease is often undertreated in part due to racial and ethnic biases. In too many cases, African-Americans are treated as drug seekers. One research reported that more than a third African-Americans in the USA who have visited the emergency department in efforts of relieving pain associated with the disease had experienced racial discrimination (Tait & Chibnall, 2014). These numbers are particularly high considering in the USA majority of the individuals living with sickle cell are comprised primarily of individuals from different racial and ethnic minority groups. One particular research that focused on the racial discrimination in pain management in patients with sickle cell concluded that there is a necessity to develop mechanisms that can be applied to identify the perceived bias associated with the burden of pain in efforts of reducing and eradication the different forms of discrimination in the American health system. The study sought to examine the patient’s perception of the level of bias in healthcare facilities in correspondence with their self-reported level of pain. The perceived discrimination from a health worker particularly a nurse was thought to be grounded on the patient’s race and ethnicity. The results indicated that patients in the cohort of the study reported higher levels of discrimination from healthcare providers compared to other African-Americans using similar instruments.
It is important to acknowledge that negative perception and attitudes that are grounded on race and ethnicity limit health outcomes since nurses are vital conduits in the content and context of information that is delivered during primary care. The theory of self-care management in sickle cell disease recognizes that there is a lack of sickle cell crises recognition system, which illustrates a vulnerability that negatively affects health outcomes and the quality of life in patients with sickle cell disease (Freiermuth et al., 2014). Negative attitudes and perceptions affect the patient-nurse relationship which further contributes to poor health outcomes in patients with sickle cell disease. Indeed, negative attitudes and perception towards the association between opioids and sickle cell disease are the main reason why many sickle cell patients limit or delay seeking medical attention, which adversely affects the patients in the long run. Undeniably, the consequences are presented in more significant and uncontrolled pain associated with more advanced issues when the care is finally sought.
Bloom’s Taxonomy and Learning Outcomes
The Bloom’s taxonomy was created with the intention of promoting and supporting higher forms of thinking in education including concepts such as analysis and evaluation of certain processes and procedures rather than focusing on memorizing and remembering facts. The Bloom Taxonomy recognizes three core domains of learning including cognitive that illustrates the mental skills, affective that focuses in feelings and emotional state and psychomotor which refers to manual and physical skills (Clark & Price, 2012). Therefore, the teaching and learning technique focuses on knowledge, skills, and attitudes. The knowledge domain encompasses six core factors that are necessary for every nursing student. They include; knowledge, comprehension, application, analysis, synthesis, and evaluation.
The nursing school concentrates in this particular spectrum since it is necessary for each medical provider to remember the knowledge thought, understand it, know how to apply the knowledge effectively, analyze the application and eventually evaluate the information. In this particular case, it is necessary for each nurse to know and understand sickle cell and its associated procedures and behaviors. In the delivery of care, the nurse should apply the knowledge and analyze how the practice concurs with the facts learned in the case and proceeded to evaluate them. Therefore, under the cognitive sector, the learning outcomes include understanding the point that sickle cell as a disease is associated with chronic pain which requires opioid as the primary intervention (Clark & Price, 2012). Moreover, it is imperative for the nurse to understand that since there is no useful objective measure of pain the assessment relies on the patient’s self-report. The application of the knowledge involves delivery care as expected and preventing the aspect of falling trap to undertreating pain in sickle cell patients with the intention of addressing another different social issue, addiction. Essentially, assessing the learning outcomes is both an art and a science that involves more than remembering of facts but rather the application of both the concepts of art and science to showcase “true” evaluation.
Another core domain in Bloom’s Taxonomy is affective which ultimately illustrates attitudes. In recent years, many professions including nursing are embracing this particular learning outcome considering the contemporary society efforts of inclusion and diversity. The issue of beliefs is particularly sensitive in nursing since nurses interact with patients on many occasions and are capable of influencing their attitudes and perception (Clark & Price, 2012). In this particular case, the learning outcome involves nursing students disregarding their preconceived ideas on the association between pain and opioid and the racial and ethnic stereotype related to drug use. Since medical providers often rely on objective measures in their medical decisions and pain assessment lacks such a measure, it does not warrant the application on previous perceptions and attitudes on how to assess and treat pain. While it is imperative for a nurse to trust his or her instincts, it is essential for all nurses to acknowledge that self-reporting is a recognized and the most reliant pain assessment tool. Moreover, every nurse should recognize it is unfair to link drug-seeking behavior to a particular race without definite proof of the actions of each.
Conclusion
Experiencing discrimination due to their race or health condition in most cases influences a patient’s approach to medical intervention. Sickle cell disease is a severe medical condition that affects both an individual’s body and psyche. Individuals suffering from this particular condition experience chronic pain and are susceptible to various health effects including but not limited to infections and strokes. Opioid is the most common form of intervention in the management of pain in patients with sickle cell. However, many healthcare providers are often reluctant to administer high dosages of opioid with the perception that they are enabling the addition of the patients. These perceptions are often influenced by the health worker religion, education, experience and the common stereotype in the general society. Undeniably, many nurses associate race and ethnicity with a patient’s self-reported level of pain subsequently proceeding to undertreat the pain. Imprecise assessment and under-treatment of pain results in poor health outcomes and low quality of life in individuals with sickle cell disease. It is imperative that nursing students understand the importance of foregoing preconceived perceptions and attitudes in the efforts to reduce and eliminate the level of disparity in the USA health system.
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