Historical background of HIV/AIDS
The origin of the human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) is a debate lasting for the period of the illness. Although believed to have originated from the developed nations, its spread across the world was rapid. Whatever its origin, the impact of the HIV and AIDS pandemic cannot be denied. Since officially diagnosed in July 1981, among young gay men in New York and California, and was initially branded as “gay cancer” or as Kaposi’s sarcoma, it has spread copiously across the globe. The patients presented with fevers, flu-like symptoms, and pneumonia called Pneumocystis. This set of symptoms was later called Acquired Immune Deficiency Syndrome (AIDS), a term coined by the World Health Organization (WHO) in 1982 (Cichoki, 2007). Nurses have been supportive of the patients infected with HIV. For instance, in New York state, professional nurses, are responsible for “diagnosing and treating human responses to actual or potential health problems through such services as case finding, health teaching, health counseling and provision of care supportive to or restorative of life and well-being…”(SED, 1995). They have studied and researched the role of the professional nurse in the HIV epidemic. Further, nurses have been involved in policy formulation and in education as well as direct care in matters concerning HIV and AIDS. Since its recognition in the Northern Hemisphere in the 1980s, persons infected with HIV have been progressively increased in numbers as their lifespan increases. This increase in lifespan due to improved clinical management of the infection over the years with Antiretroviral Therapy (ART) has changed the landscape of the infection from acute to chronic disease. For many countries, this state of chronicity is still, exceptional, and even in Canada, some argue that it is not a chronic disease yet, due to the complexity, stigma, and early death. Antiretroviral drugs, which are essential to HIV care and generally available in developed countries, offer little hope in the developing world where most people with HIV are desperately poor with little or no access to the health care needed to administer and monitor AIDS drugs. As part of this complexity and scarce resources, many countries continue to struggle with access to care – in this context; nursing has a voice to promote health equity.
HIV/ AIDS as a chronic disease
There has been a lot of controversy surrounding the issue of whether HIV/AIDS qualifies as a chronic disease, with part of the reason being the character of the disease. Unlike most other diseases, what makes HIV/ AIDS different is the fact that it drastically increases the body’s vulnerability to numerous other diseases by weakening the immune system and that it remains a highly stigmatized disease. HIV/AIDS does not cause the degradation of the body, which is characteristic of its sufferers. Therefore, some people look at the disease from the impact perspective and thus form the opinion that it does not qualify as a chronic disease, but as Foucault (1982) notes, it’s all about one’s thoughts as they drive behaviors and perceptions. However, HIV/AIDS has other attributes such as its persistence, its long-term effects on the sufferer’s body, and the fact that it has no cure, thus qualifying it as a chronic disease.
Associated with the transformation of HIV into Chronic disease comes specialized care, which is an essential attribute that most qualified nurses possess. Patients under chronic care require holistic care, which means that their care providers, who in most cases are nurses, have to focus on the physical, psychological, emotional, and at times spiritual health of such patients. Nurses bear the burden of ensuring they make proactive decisions with their patients while maintaining their patients’ freedom to accept or decline treatment and maintaining the patients’ dignity, respect, and professionalism.
Historical perspective
Some attributes from the traditional form of nursing practice apply in modern nursing practice and make important contributions to chronic care. For instance, the combination of professionalism and personal characteristics, such as multi-tasking, makes nursing a valuable part with regard to nursing care as a whole.
Historically, nursing was more of social responsibility than a profession (Judd, 2009). In most societies across the world, the responsibility of caring for the sick in the community feel on the family and the entire society. For instance, the Catholic Church is one of the oldest churches known for its healthcare services to the community (Judd, 2009). This perception conforms to Immanuel Kant’s deontological presumption that moral gestures or actions emanate from a sense of duty (Holzemer, 2007). According to Kant, no other form of action falls under the moral classification as most actions involve selfish reasoning and are thus immoral. Examples of groups that made a notable impact in society and paved the way to nursing practice and modern healthcare provision include Sisters of St. Francis and Little Sisters of the Poor. The practice also exhibited elements of altruism, as the nuns did not expect payment for their services (Pyyhtinen &Tamminen, 2011). Although the concept of altruism benefited the majority of the population, its roots were more in Christian teaching than personal decisions.
During the eighteenth century, formal education was not a requirement for the practice. Most of the learning took place through apprenticeship. This aspect meant that at times the most applicable method of treatment was the use of trial and error for the determination of the appropriate medicine. As a result, accidental diagnosis and prognosis were common thus leading to high mortality rates, especially for women and children. Another notable characteristic of the pre-nineteenth-century nursing practice was the fact that nursing was mainly a preserve for women. One of the reasons that this concept was prevalent at the time was because the law did not allow women to own property or participate in income-generating activities in which men had the privilege of participating. This culture was so strict that in most societies, women would remarry in the event that they lost their husbands through death. A good example of such culture in Britain was during the Edwardian era in the 1800s. Women would gladly offer their assistance in nursing as a way of engaging in meaningful activities that made a difference in society. The second reason is that women are innately caring and motherly, which are essential characteristics in nursing, especially in the professional arena. Events in the Second World War were significant in nursing history for most countries as they led to the establishment of professionalism in nursing. One of the most significant characters in nursing history was Florence Nightingale. She formalized the study and practice of nursing through writing books on proper treatment procedures and ethics based on her experience as a nurse (Sochan, 2011). Her contributions set the pace for the establishment of the first nursing school in the United States (the New England Hospital for Women and Children), thus leading to the graduation of the first trained nurse in the US, Linda Richards, in 1873. Saint Marianne Cope’s contribution in the establishment of America’s first general hospital set standards in terms of cleanliness, which continue to improve until date (Pols, 2006).
One of the main effects of traditional nursing practices from the nineteenth-century era have for a long time had on modern nursing practice is an exercise of authority in decision-making (Draper, LaDou & Tennenhouse, 2011). During the First and Second World Wars, thousands of nurses enrolled in the military as part of their service to their countries. Although the enrolment created a big incentive for application to nursing schools, nurses usually applied their expertise in treatment under instructions from doctors, thus creating the perception that nurses were subordinate to doctors (Radcliffe, 2000). Although the situation at the time required such coordination of authority, the impression it created had long-term effects on society’s perception of the independence of nurses to make appropriate medical decisions for patients. This perception persists among some patients in modern patient-nurse relationships, thus making it difficult for nurses to apply their expertise when situations call for them. For instance, in most cases, patients insist on talking to doctors first regarding their medical situations creating the impression of a lack of confidence in the skills nurses possess (Armstrong, 2009). This aspect in turn affects the general attitude nurses have towards patients, especially those that require specialized treatment such as chronic care patients.
However, in attending to patients under chronic care, nurses have to act independently and apply their expertise as and when needed and according to the patient’s needs. Being non-judgmental and caring are some of the attributes that resonate from the traditional nursing practice into the present form. Although the attributes also apply to a general nursing and acute care, they are essential in chronic care, especially considering the stigma that accompanies HIV/AIDS.
Theoretical perspective
Over the years, numerous theories have emerged in a bid to create a better understanding of the nursing practice. The theories assist nurses in the determination of appropriate treatment processes and largely aid in decision making, especially on matters concerning chronic care. In consideration of HIV/AIDS, a careful evaluation of various theoretical perspectives enables nurses to make objective independent decisions that cater to the welfare of the patient while maintaining his or her dignity and respect, as the profession requires. Such considerations, as Fawcett and Downs (1986) note, are part of the necessity for constant research and development of the practice for the provision of the best care possible for chronic care patients. Technology has further enhanced the role of nurses through the provision of an avenue that aids in what Heidegger (1977) calls innovation through networking and sharing knowledge.
One such theory is modeling and role model theory by Helen Lorraine Erickson. Erickson bases her theory on her experiences as a nurse. In her opinion, efficient and effective nursing comprises a holistic approach to treatment and other aspects of patient care such as professional advice and after-treatment follow-ups. In her opinion, Erickson expresses the view that in attending to patients, nurses should consider elements such as the soul, spirit, and human form and not just medical procedure (Santos, 2005). This assertion is especially critical for patients with terminal illnesses and under chronic care. She explains that the outlook such patients have on matters concerning the end of life is critical to the way they respond to treatment.
Therefore, it would be prudent for nurses to discuss such matters with their patients to ensure their engagement in the treatment process. For instance, patients suffering from HIV/AIDS experience stigma from society as the disease progresses and the body’s immune system degenerates, thus leading to degeneration in physical health and appearance. Although in most cases nurses would concentrate on the physical wellbeing of the patients, the emotional and psychological wellbeing is just as important and it goes a long way in ensuring meaningful efforts by caregivers. Erickson also points out that religious concern from patients plays a role in the type of care they receive (Chin, 2006). For instance, some religions believe in ‘natural wellness options’ such as plants as opposed to advanced medication that involves injections and consumption of pills. It is important for nurses taking care of such patients to understand and appreciate such religious viewpoints and develop treatment options that create a balance between such religious beliefs and the protection of the patient’s health, whether or not the patient is undergoing chronic care.
A separate but similar theory, the Neuman systems model, by Betty Neuman, a community health nurse, and counselor, revolves around an individual’s relationship with stress. According to Neuman, a normal line of resistance and a flexible line of resistance surround an individual’s energy resources, such as temperature, genetic structure, and the body’s stress response pattern. Nurses are responsible for the maintenance of the stability of the two lines that form part of the body’s internal resistance mechanism when ensuring the adequate safeguarding of the patient’s health. Different patients respond differently to different situations forming variations in the types of treatment they receive, even when suffering from the same ailment (Holzemer, 2008). For instance, in normal situations, the stomach produces hydrochloric acid during digestion. However, in some instances, high-stress levels cause dysfunction in the body that results in the hormonal trigger of the acid in the stomach, thus corroding the stomach lining. This corrosion serves as one of the causes of stomach ulcers. In other instances, patients may experience psychological stress leading to internal anatomical reactions such as the release of thyroid hormones, altering some of the body’s metabolic reactions. Such scenarios result in physical manifestations such as excess or inadequate body heat. In dealing with such conditions, nurses have to understand their patients well enough to establish situations that cause them stress in order to establish ways to manage them.
Neuman proposes prevention as the surest way of managing such conditions, especially when dealing with patients in chronic care. Her prevention system consists of three classes of preventive measures including primary, secondary, and tertiary prevention. Primary prevention comprises “measures that involve the nurse protecting the body’s external or normal line of defense from stress and strengthening the flexible line” (Daves, 2005, p.18). Secondary prevention involves strengthening the body’s internal resistance to stress through medication and diet, thus reducing the impact of stress on the body, while tertiary prevention comprises protection of the recovery process and return to good health. With regard to tertiary protection, Neuman indicates that, by protecting the progress of treatment, patients recover better and in cases of chronic care experience a better quality of life, slowing down the progression of illnesses and making life more manageable for patients.
A third theory, the Orem model of nursing by Dorothea Orem, suggests that most patients prefer taking care of themselves. Orem is of the view that individuals prefer taking care of their own needs in every aspect of life including health. However, in some instances, people experience situations that cause the inability to fulfill the need for self-care, creating a self-care deficit. In this theory, the nurse’s duty is to identify and remedy the deficit, hence enabling the patient to return to independent self-care. Orem identifies three requisites, viz. the universal requisite, developmental requisite, and health deviation requisite (Santos & Cameron, 2010). The third classification is especially applicable to chronic care for patients suffering from HIV/AIDS. In the application of this theory, the treatment process for such patients, especially in the initial stages of their illnesses, requires nursing that involves the empowerment of the patient to take care of him or herself. Orem is of the view that such empowerment aids in quick recovery and a better attitude to the illness in comparison to taking care of every need a patient may develop. She notes that people feel better when the treatment process gives them some amount of power over their situation (Canguilhem, 2008). For instance, by giving patients drugs to consume at home and teaching proper ways of handling health issues that arise from HIV/ AIDS rather than requiring patients to visit a health center often, nurses give patients control over their situations.
Philosophical perspective
Apart from the medical perspective to illnesses, moral and political aspects also affect nursing practice, which is part of the reason for the development of varying philosophical theories. Most philosophical theories apply in assisting nurses to make the right decision in difficult situations that do not necessarily require strict medical solutions. Although the majority of them apply to social perspectives on most issues, the views in most cases have implications to medical decisions and are thus important, especially for nurses as they have personal social interactions with patients in addition to professional relationships (Harding, 2004; Drummond, 2004).
One example of situation that involves more than strict medical solutions is euthanasia. Euthanasia involves a medical practitioner aiding a patient to end his or her life, usually in circumstances where such a patient suffers from an incurable disease such as cancer or HIV/AIDS. The procedure is controversial, mainly for moral reasons (Callahan, 2001). In most countries, the law provides for the protection of life as one of the basic human rights. However, controversy occurs when questions arise concerning an individual’s right to take his or her own life. Proponents of moral absolutism, such as Thomas Hobbes, argue that actions concerning morality fall under two classifications, viz. right and wrong and that there can be no middle ground. In most societies, life is sacred and thus it is every individual’s duty to protect it by whatever means necessary. Therefore, according to the theory, taking a life is wrong, regardless of the circumstance. Although in most cases euthanasia occurs in instances where patients with terminal illnesses suffer chronic pain with no solution, proponents of this theory argue that it serves as no excuse to take life (Risjord, 2010). Such views have led to the development of terms such as ‘assisted suicide.
On the other hand, proponents of the utilitarian theory such as John Stuart Mill, argue that a person should have the ability to do as he or she pleases as long as such activity does not cause harm to others. Although this argument may suffice in support of euthanasia, issues of how taking one’s life may cause harm to others are contentious. For instance, it is arguable that a parent who takes his or her life in fulfillment of the procedure causes harm to his or her dependents. Other people may argue that prevention of the process causes harm to the patient in terms of pain and therefore disregard of the option is cruel and hypocritical. Additionally, a person in the late stages of a terminal illness may not be very dependable and thus there would be no real harm to the dependants. Patients in advanced stages of HIV/AIDS are, for example, physically weak and experience pain, which may give rise to the exploration of euthanasia as an option. Proponents of the utilitarian theory usually compare such situations with people in clinical comas (Mill & Ogilvie, 2010). They argue that it is cruel to allow a person who does not feel pain due to being brain dead to exercise the option even though in most instances they have no say in it while disallowing people who chose the option willingly due to excessive pain.
Another philosophical theory that applies in most scenarios concerning moral medical dilemmas is the relativism theory, which proposes that the correctness or otherwise of most moral decisions depend on circumstances and thus absolute morality does not exist (McCready, 2010). Therefore, in most cases, a nurse is bound to make decisions based on the existing circumstances and consideration of the patient’s welfare. However, the application of this theory to treatment processes has resulted in a majority of lawsuits between the families of patients and healthcare facilities management, especially because such decisions rely on the personal conviction of nurses (Georges, 2008). For instance, in most chronic care cases, nurses develop personal relationships with patients, which is understandable given the long duration of the treatment process most patients with long-term illnesses undergo (Caine & Lavoie, 2011; Weinberg, 2006). Although such relationships present advantages for nurses in terms of obtaining relevant information concerning changes in the patient for accurate treatment such relationships also present disadvantages that result in dilemmas when making critical decisions (Björnsdóttir, 2001). For instance, in a scenario where a healthcare facility has a low budget for chronic care, is understaffed and a patient in pain asks a nurse with a personal relationship to perform euthanasia, a sympathetic nurse would most likely do it without consideration of issues such as consent from the patient’s family and the hospital’s overall reputation. This aspect opens up the possibility of a lawsuit (DeWit, 2009).
Politics also affect nursing practice and the delivery of healthcare services in terms of prioritizing funds for various applications in healthcare facilities (Weber, 2001; Code, 2006). The determination of the gravity of illnesses and patients that require healthcare assistance more than others do usually lies on nurses owing to their frequent personal interaction with patients, often creating moral dilemmas. Chronic care patients often experience the full blow of the effects, as they are prone to financial strain when government funding is low due to the status of their illnesses, expensive treatment procedures, and low chances of recovery. Patients with HIV/AIDS particularly experience hardships in instances where government funding for the procurement of drugs is low as the drugs are expensive for the majority of the patients, especially in developing countries. In addition, low payment packages for nurses and understaffing due to low income aggravates the situation, thus lowering the standard of care available for patients under chronic care (Allen, 2004).
Looking at nursing from a philosophical perspective also raises the issue of whether such care constitutes social responsibility, whether healthcare is a right or privilege, and whether nurses should look at treatment from the business perspective or part of humanitarian service. All these elements indirectly affect the quality of care patients get, regardless of their illness status (Mol, 2006). For instance, in consideration of the business element of the healthcare equation, a nurse would take place higher priority for the treatment of patients with health insurance and procedures that cost less for the hospital over patients with low income and are unable to pay for expensive procedures. Such procedures include long-term treatment of HIV/AIDS and other terminal diseases (Camargos, Cameron & Smith, 2012). In consideration of whether health care qualifies as a right or privilege, a nurse would be more inclined to apply higher standards of care to chronic care and healthcare in general as a right and have selective tendencies in the case of a privilege. Although consultation is essential in making these types of decisions, the final decision lies with a nurse after careful consideration of all the possible options and his or her patient’s situation, especially in emergency cases.
Conclusion
HIV infection has shifted to a chronic disease as it has no cure and has a long-term impact on its sufferers. This shift has generated controversy as to whether HIV is an exceptional or chronic disease. In spite of the argument, nursing has contributed tremendously in various aspects of the management and care of the illness, as far as chronicity is concerned. Historically, members of the nursing profession have been involved in the direct care and research of HIV and AIDS. Nursing theories, as well as philosophies, were explored as a guide in the provision of care.
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