The most common blood disorder in the United States is Sickle Cell Anemia (SCA). Approximately seventy-five thousand Americans suffer with the disease (Burnette, 2009). SCA is an inherited disorder and affects mainly those of West African and Caribbean descent; though it is prevalent and can affect a person from any race in all the parts of the world (Thomas & Cohn, 2005). The disorder causes the red blood cells to become crescent shaped and lose much of their ability to transport oxygen. This results in chronic pain that may lead to crisis of severe pain requiring hospitalization. The pain is frequently subjective with no observable medical evidence of the presence of discomfort (Burnette, 2009).
Patients with SCA frequently utilize the health care system. Patients average 2.59 visits for medical treatment yearly, 95% CI, 2.53 – 2.65. Re-admissions are common with approximately 33% of patients returning for care within thirty days, 95% CI, 33.0% - 33.8% (Brousseau, Owens, Mosso, Panepinto, & Steiner, 2010). Since “in most cases” the symptoms have been present since childhood, most patients do an excellent job coping with their pain (Elander, Marczewska, Amos, Thomas, & Tangayi, 2006). Most management is done at home and the incidence and severity of pain is often underestimated. Daily chronic pain is experienced by 33% of patients with SCA, 95% CI, 0.51 – 0.61, while an additional 29% report pain at least on 95% of days, n = 68, 4.9 – 5.3, p < 0.001 (Smith et al., 2008).
While utilizing the health care system this patient population faces many barriers. In acute care settings, pain is underestimated in both the minority and sickle cell populations (Elander et al., 2006). Racial and cultural issues play a role. Health care providers are not routinely trained to communicate with minority populations (Thomas & Cohn, 2005). Socioeconomic, educational, insurance, and psychosocial issues have an impact (Pack-Mabien & Haynes, 2009).
There are several factors that affect the management of pain. These can be grouped as educational, interpersonal and social issues that may affect the patient, his/her family and health care professionals. One example of the interpersonal factors is attitude. According to (), many nurses tend to develop their beliefs and attitudes about pain and use of opioids from their ethnic backgrounds, within their families, communities, churches and the values they hold before they join the nursing school. Attitudes, learned behaviors, coping mechanisms and beliefs may entirely differ from those of patients and physicians, which eventually lead to inaccurate pain estimates and under-treatment of pain.
Among health care providers a great amount of prejudice and bias towards patients with sickle cell anemia is apparent. It is difficult for patients to get pain relief. Lower triage levels and long wait time for medication is common in emergency departments (Tanabe et al., 2008). Health care providers have shown lack of empathy and understanding of the disease. They report that sickle cell patients are hard to care for, hard to communicate with, demanding, and resentful. They do not trust the patients and find ways to avoid them that increases barriers and decreases communication. Many providers label the patients as addicts or drug seekers (Thomas & Cohn, 2005). In addition, lack of knowledge about the pharmacology of opioids and a concern that the patient risk addiction to narcotics is one of the main reason for under-treatment.
Nurses judge the reality of pain, patients’ judgment, and character based on several factors including patients’ presentation, nurses’ opinions of the cause of pain, and relationships. When it is felt that the patient could not control the pain, medical evidence supports the existence of the discomfort, and the nurse-patient relationship is positive; there is a much higher rate of sympathy. Sickle cell patients in pain frequently exhibit coping that closely resembles addiction. Under-treatment of sickle cell pain is caused far more frequently by a nurses’ judgment of the presence of addiction than its actual occurrence (Elander et al., 2006).
Sickle cell patients report decrease in their perceptions of the quality of health care received due to these barriers and biases. They are less satisfied with nursing care; they do not trust health care providers, feel discriminated against them, and feel that their pain is not adequately relieved (Kam et al., 2008). These feelings cause patients to be hesitant in returning to the health care system even when required. It is common for patients to wait until the pain is unbearable before seeking treatment. This leads to increased difficulty in getting pain relieved and puts the patient at risk for life-threatening complications. Patients are frequently hostile or defensive on future acute care visits (Burnette, 2009).
Additionally, due to misconceived and preconceived thoughts about sickle cell patients and narcotic addiction, nurses and other professionals tend to be reluctant in administering the correct doses of opioids. Consequently, patients may seek help for pain relief from several persons of other staff due to the persistent, undertreated pain. This makes the nurses and medical staff to perceive these patients as exhibiting manipulative behavior (Waters 1995).
Statement of the Problem
Non-communicable diseases, particularly genetic diseases, for example, Sickle Cell D are the chief cause of mortality and morbidity. The sickle cell gene is widespread and occurs to people from all over the globe; though, it is most prevalent among people living in malaria-prone areas. Also, it is more prevalent in people who have black origin and is common in sub-Saharan Africa.
The chronic nature of Sickle Cell D demanding strong medical attention throughout the patient’s life, supportive symptomatic therapy, the high morbidity associated with it, reduction in life expectancy of those being affected, the specialized care required and the burden, which it brings to the families of the affected members - all this indicate that the condition is a key health problem wherever it is prevalent. Since SCD causes enormous health problems, patients suffering from it need to have a good relationship between them and the health care professionals.
Despite the major advances in the treatment of SCD in the past three decades, there still exists a significant gap in the equity of public and private philanthropic support of research. There is also a gap in the uniformity of quality provision of clinical care for SCD patients. Based on the fact that a patient receives highest percentage of care from the nurse over all other health professionals, and the fact that SCD pain management requires specialized care and attitude from the nurses, the researcher feels the need for further research on that how to improve the nurses’ attitude towards patients with SCD, which triggered the interest of the researcher to conduct this research. SCD patients often experience severely painful, recurrent episodes which require the use of opioids. Reluctance to prescribe and admit this drug to the patient results in adverse relationships between care providers and the patient. Such reluctance is mainly a consequence of ignorance and lack of understanding the underlying pathophysiology of SCD and the pain associated with it. Extensive research, education and hands-on experiences are the main factors that will result to more empathic approach towards the patients. Lack of adequate knowledge about SCD and issues of pain management is what that leads to negative attitude among nurses and other professionals towards the affected persons.
Patients suffering from Sickle Cell Anemia do not get adequate treatment for pain. Many factors cause a lack of empathy on the part of health care providers. The quality of care being received is decreased by feelings of mistrust, fear of addiction, poor communication, and inadequate nurse to patient relationships. One study suggested that experience is the key factor in eliminating this disparity (Elander et al., 2006).
Purpose of the Study
This study seeks to explore the feelings and attitudes of nurses on inpatients’ units where sickle cell patients are routinely treated. It will seek to explore nurses’ personal attitudes, practices, and knowledge level related to SCA. It will also examine the barriers perceived by nurses to providing adequate pain control for SCA patients. Finally, it will assess what effect, if any, demographic factors of individual nurses have on these factors.
The objectives of this study are to answer four questions:
1) Do nurses’ self-assessed attitudes, practices, and knowledge levels relate to treating pain in patients with sickle cell anemia?
2) What do nurses perceive as barriers to adequate pain control for SCA?
3) Do the demographics of age, gender, educational level, years of experience and assigned shift influence on these factors?
Significance of the Study
The results from this study would be significant for hospitals that wish to improve the quality of care being delivered and patient satisfaction of patients with Sickle Cell Anemia. The perceptions and attitudes of the nurses may have a significant impact on the assessment of pain and delivery of relief measures. As the patient advocate and mediator between patient and physician, the nurse has a great deal of influence over patients’ outcomes. Using these results to educate nurses on the disease process, biases, and barriers could help to increase treatment of sickle cell pain.
The theoretical framework that will guide this study is Madeleine M. Leininger’s Theory of Cultural Diversity and Universality (Parker, 2007). The United States has a rich heritage of diverse cultures provided by a flood of immigrants from around the world. Leininger saw the differences in the parental guidance, children’s behaviors, attitudes towards health care, and beliefs of these different cultures. Health care workers were not equipped or educated to handle these differences, and the need for knowledge of different cultures to promote excellent health care was recognized.
There are many indicators that outline the need for transcultural care. There is a need for different cultures to receive care specific to their unique circumstances. There are conflicts between cultures with different beliefs and attitudes. Cultures who did not receive care responsive to these needs show hesitance to seek medical care. Anger from clients, frustration of providers, misdiagnosis, poor patient satisfaction, and poor outcomes are common when cultural competence is not present (Parker, 2007). The indicators that lead to the development of the framework closely mirror the outcomes documented in the sickle cell population.
The theory states that nurses must have knowledge of the specific health care needs of different cultures in order to provide them with adequate health care (Parker, 2007). For the purposes of this study two conflicting cultures exist. The first one is the sickle cell population with a culture of ambivalence towards the health care system that is a result of prejudices. The second culture is the belief system of nurses, which leads to bias and under-treatment of pain.
The theory defines several key concepts. The first suggests that commonalities exist within cultures. For appropriate care to be administered, the provider must be knowledgeable of these commonalities. The second tenet is that cultures have social structures and that these beliefs affected the outcomes of health care. The third concept is that there is difference between professional care and generic care. Generic care leaves gaps that lead to conflict and inadequate care of unique cultures. Professional care leads to satisfactory care with good outcomes. Resolutions of conflicts are essential (Parker, 2007).
Three modalities to providing trans-cultural care are identified in the theory. They focused on maintenance, negotiation, and restructuring in the provision of care. This type of care, which is tailored to the needs of the culture served, being professional and holistic. It focuses not on generic symptom management but on the experience of symptoms and prescription of treatment that was based upon the culture of the patient and the theory (Parker, 2007).
The Theory of Cultural Diversity and Universality is an ideal framework to study the cultural attitudes of nurses towards providing care for sickle cell patients. Professional nursing care must be knowledgeable about the cultures of the patients they serve in order to provide adequate care that leads to positive patient outcomes. An attitude that a sickle cell patient is not really hurting but simply seeking pain medication may indicate of lack of knowledge of the disease and specific needs of the patient.
The following assumptions are made for this study:
1) Nurses with experience treating sickle cell patients have general perceptions of the reality of pain during a sickle cell crisis.
2) Nurses’ perceptions have a direct impact in the delivery and care and pain relief experienced by sickle cell patients.
3) Subjects who met the inclusion criteria have previously and would continue to encounter sickle cell patients in the course of their work.
4) Nurses are willing honestly to express their perceptions of selves and others as it relates the care of sickle cell patients.
5) There is a general attitude among nurses that despite perceptions or practice a common goal is pain relief and patient satisfaction.
6) Delivering high quality nursing care is the goal of all nurses.
Theoretical and Operational Definitions
For this study, the following terms are defined:
1) Experience is defined as a nurse’s previous experiences caring for patients with Sickle Cell Anemia in acute care environments.
2) Perception is defined as nurse’s feelings and attitudes towards the sickle cell population, the reality of reported pain, and prioritization of relieving that pain.
3) A nurse is defined as any Registered Nurse or Licensed Practical Nurse licensed in the state of Georgia meeting the inclusion criteria for the study.