Psychosocial Challenges Experienced by Patients at Terminal Stage of Illness and Their Perception of Palliative Nursing Care in Tertiary Hospitals in Enugu State, Nigeria.
CHAPTER ONE
Purpose of the Study
The purpose of the study is to determine (using descriptive phenomenology) the psychosocial challenges experienced by hospitalized cancer patients (stages III & IV) and how they perceive palliative nursing care received from nurses in tertiary hospitals in Enugu State, Nigeria.
CHAPTER TWO
LITERATURE REVIEW
This chapter presents review of related materials from books; abstracts from both published and unpublished articles from University libraries, journals and internet materials, under the following headings:
Conceptual review
- Terminal illness
- Psychosocial challenges of patients at terminal stage of illness
- Palliative nursing care
- Perception of patients to palliative nursing care
Theoretical review
- Dignity model
Empirical studies on psychosocial challenges of patients at terminal stage of illness and their perception of palliative nursing care.
Summary of literature review
Conceptual review:
Terminal illness
Terminal illness is a medical terminology popularized in the 20th century for an active and malignant disease which cannot be cured and is expected to result in the person dying from the illness or complications linked to the illness (Meremikwu, 1998). Smeltzer and Bare (2004) defined it as a progressive, irreversible illness that despite cure – focused medical treatment will result in the patient’s death. A terminal condition is an irreversible illness that will result in death in the near future, or a state of permanent unconsciousness from which recovery is unlikely (Smith, 2008). It can be described as a deteriorating, life – threatening disease or condition for which no effective standard treatment exists. This may not mean that treatment cannot be provided, which may delay the progress of the illness, and/or enhance the quality of the person’s life whilst experiencing the progress of the illness. It is possible for people at terminal stage of illness to live for years before succumbing to the medical condition since the person may be diagnosed in the early stage of the illness.
Very few illnesses are considered terminal in and of themselves, these include AIDS, Duchenne muscular dystrophy, some forms of acute leukemia, and severe acute radiation sickness (Adenipekun, et al., 2005). The majority of terminal illnesses are advanced stages of certain diseases or cancers or conditions such as advanced renal failure, heart failure, Alzheimer’s disease, etc (Meremikwu, 1998).
Cancer, as a terminal illness, is a term used for diseases in which abnormal cells divide without control and are able to invade other tissues (National Cancer Institute, 2007). Cancer is a growth of abnormal cells in the body (Rwickman, 2006). There are benign growths and malignant growths, cancer is the common term for all malignant tumours. It is derived from the latin word for crab because a cancer adheres to any part that it seizes upon in an obstinate manner like the crab.
All cancers begin in cells, the body’s basic unit of life (National Cancer Institute, 2007). The body is made up of many types of cells. These cells grow and divide in a controlled way to produce more cells as they are needed to keep the body healthy. When cells become old or damaged, they die and are replaced with new cells. However, sometimes this orderly process goes wrong. The genetic material (DNA) of a cell can become damaged or changed, producing mutations that affect normal cell growth and division. When this happens, cells do not die when they should and new cells form when the body does not need them. The extra cells may form a mass of tissue. The growth of cancers is accompanied by progressive infiltration, invasion and destruction of the surrounding tissue. They recognize no normal anatomic boundaries. The development of metastases and invasiveness is the most reliable feature of malignant tumour. Cancer cells can spread to other parts of the body through the blood and lymph systems (Iseh and Malami, 2006). The invasiveness of cancer permits them to penetrate into blood vessels, providing the opportunity for spread. In general, the more aggressive the more rapidly growing and the greater the likelihood that it will metastasize or already has metastasized.
CHAPTER THREE
RESEARCH METHODS
Introduction
This chapter presents the research design, area of the study, setting, study population, sampling procedure, instrument for data collection, method of data collection, data analysis and trustworthiness of the study.
Research Design
Descriptive phenomenology (developed by Husserl, 1962 in Polit and Beck, 2006) was qualitative research design selected for use in this study because it was designed to describe human conscious experience of everyday life as people experienced them. It was use to elicit richly detailed narrative descriptions of psychosocial challenges experienced by advanced cancer patients (stages III & IV) and their perception of palliative nursing care received in tertiary hospitals. It provides opportunity for the participants to express their experiences in narrative form freely, without structured hinderances using indepth face-to-face interview.
In qualitative studies, researchers attempt to put aside temporarily any presuppositions they may hold about the phenomena they are studying, allowing phenomena to come directly into view without distortion by researchers’ preconceptions. “Bracketing” is the term used by Husserl (1962 in Polit and Becks, 2006) to describe this process of identifying and holding in abeyance preconceived beliefs and opinions about the phenomena under study. In this study, the researcher, therefore, strive to bracket out the world and any presuppositions in an effort to confront the data in pure form but brings the experience into clearer focus.
CHAPTER FOUR
PRESENTATION OF FINDINGS
This chapter presents the findings of the study. Eighteen (18) cancer patients (stages III & IV) admitted in the three tertiary hospitals in Enugu who met the inclusion criteria were interviewed and their responses recorded appropriately. So, 18 patients participated in the interview process.
CHAPTER FIVE
DISCUSSION OF FINDINGS
This chapter presented discussion of the major findings, clinical implications for practice and research, limitation of the study, conclusion and recommendations.
Most of the psychosocial challenges experienced by the advanced cancer patients (stages III & IV) in this study have been identified previously such as anxiety, fear of outcome of the disease, worrying, sadness/depression, loss of control, praying for death to come (Tomaszeski, 2001; Paice, 2002; Chan and Chung, 2005; Chochinov, 2006; Smith, Davis, Wright, Chapman and Whileson, 2007; Kataoka, et al., 2008); feeling lonely, rejection, isolation (John and Ndebbio, 2002). Participants also experienced devastation and an overwhelming sense of powerlessness when they learnt about the illness and this may have influenced the time they seek medical care, as some of the participants blamed themselves for presenting late for medical care. Adenipekun et al., (2005) confirmed that about 70 percent of cancer patients in Nigeria present at late stages (stages III & Iv) of the illness.
Summary
The participants’ psychosocial challenges experienced were really subjective especially their most challenging experience which was worry about the disease outcome and their family welfare when they must have gone. For the nurses to really attend to these participants’ challenges there must be cordial nurse-patient relationship which can be achieved through listening to a patient’s story which will allow the nurse to identify that patient’s information and support needs. In this study, the participants’ psychosocial challenges experienced, were not cared for by the nurses, since their perceived most valued care was not rendered, which is the only way for the nurses to care for these patients. The contrasting opinions in the participants experiences and perceptions is probably due to the fact that palliative nursing care is an emerging concept in this locality. It is only one hospital among the three hospitals studied that has Oncology ward where these patients suppose to receive adequate palliative nursing care from expert nurses which will improve the quality of their life.
Conclusion
The psychological challenges experienced by the participants were many and diverse. They included devastation of the diagnosis, sense of anger and loss of self control, loneliness, and an overwhelming sense of powerlessness. Other psychological challenges experienced included anxiety, worry, sadness/depression and fear.
Social challenges experienced included limitations in performing ADL, involving others in daily activities, dependency on others for care, difficulty in communicating with healthcare providers, some family members and friends, withdrawal from relationships. Others included financial support difficulties, lack/poor encouragement from family member/friends as well as irregular visitation.
Recommendations
There is need for establishment of palliative unit for terminally ill patients for expert management. Employing clinical nurse-specialist (experts) for the palliative unit is very essential for training other nurses.
There is need for knowledge update of palliative nursing care in tertiary hospitals. This will ensure that these patients receive holistic care from experts.
It is recommended that the curriculum content of the nursing education should contain guidelines in nursing the terminally illness diagnosis. Also, planning in-service training programmes for nurses taking care of these patients to keep them abreast of new knowledge.
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