CHAPTER ONE
INTRODUCTION
1.1 Background of the Study
Life and death are inter-related and are often seen as two sides of the same coin. Unfortunately, many people feel uncomfortable discussing issues relating to death. For instance, whenever the topic of death arises, people go to great lengths to avoid words like death and dying (Corr, Nabe, & Corr, 2003). Instead, euphemisms are used to provide a more pleasant feeling and to conform to social norms. Phrases such as ‘kicked the bucket, passed away, moved on, laid to rest’, and ‘went to a better place’ are used to discuss death. Hence, the thought of death or dying is something that is uncomfortable and to a certain extent, frightening, for some, if not most people in modern society.
Death is viewed as an event that one generally has no control over and thus generates anxiety amongst people. This anxiety is thus termed death anxiety. Death anxiety which is an attitude that an individual holds towards death, is defined as a negative and apprehensive feeling that one has when thinking about death and dying, and is used interchangeably with fear of death (Wink & Scott, 2005). It has been noted that death anxiety may neither stay stagnant nor increase or decrease progressively over the years. A number of things can change an individual’s death anxiety such as familiarity with death, a sudden loss, religion, physical ailments, and psychosocial maturity. Death anxiety is the morbid, abnormal or persistent fear of one's own death or the process of his/her dying. One definition of death anxiety is a "feeling of dread, apprehension or solicitude (anxiety) when one thinks of the process of dying, or ceasing to ‘be’"(Farley, 2010). It is also referred to as thanatophobia (fear of death), and is distinguished from necrophobia, which is a specific fear of dead or dying persons and/or things (i.e. others who are dead or dying, not one's own death or dying) (Langs, 2004). How death anxiety is experienced and expressed, however, largely differs from individual to individual (DeSpelder & Strickland, 2005). Lower ego integrity, more physical problems, and more psychological problems are predictive of higher levels of death anxiety in elderly people.
Caregiving is most commonly used to address impairments related to old age, disability, a disease, or a mental disorder. Typical duties of a caregiver might include taking care of someone who has a chronic illness or disease; managing medications or talk to doctors and nurses on someone's behalf; helping to bathe or dress someone who is frail or disabled; or taking care of household chores, meals, or bills for someone who cannot do these things alone. With an increasingly aging population in all developed societies, the role of caregiver has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well (Kindersley, 2013).
Family workers provide care in a variety of situations, including care for patients receiving active curative treatment for cancer and other life-threatening diseases, for Alzheimer’s patients over the long trajectory of their disease, and for hospice patients who are near the end of life. Especially at the end of life, these workers are essential because they provide needed help with activities of daily living, medications, eating, transportation, and emotional support, as well as communicating with health care professionals about the patient’s condition (Emanuel, Fairclough, Slutsman, & Emanuel, 2000) As health care increasingly moves out of acute care settings and into homes, the role of the caregiver becomes more critical and the burden becomes heavier. Although there are rewards involved for the caregiver, serving as a caregiver over a period of time can be stressful, negatively affecting many aspects of quality of life.
A primary caregiver is the person who takes primary responsibility for someone who cannot carefully for themselves. It may be a family member, a trained professional or another individual. Depending on culture there may be various members of the family engaged in care. The concept can be important in attachment theory as well as in family law, for example in guardianship and child custody. A person may need care because of loss of health, loss of memory, onset of illness, as a response falling or the risk of falling, to address anxiety or depression, to relieve grief, or due to a disabling condition (Kindersley, 2013).
Family workers are essential partners in the delivery of complex health care services and this case exemplifies the associated caregiver burden and stress during cancer treatment. Unlike professional workers such as physicians and nurses, informal workers, typically family members or friends, provide care to individuals with a variety of conditions, most commonly advanced age, dementia, and cancer. As more and more evidence suggests that caregiving is deleterious to one's health, increased attention is being paid to the day to day well-being of workers. Compared to non-workers, workers often experience psychological, behavioral, and physiological effects that can contribute to impaired immune system function and coronary heart disease, and early death (Gouin, Hantsoo, Kiecolt-Glaser, 2008).
The level of burden upon workers of cancer patients is greater than the burden experienced by those caring for the elderly and similar to that experienced by workers of patients with dementia6. To receive a diagnosis of cancer is recognized as a significant stressor to the patient and family. However, the resultant treatment creates additional fears and challenges, and frequently requires the direct support of a caregiver including: assisting with activities of daily living, administering medications, providing transportation, preparing meals, managing finances, advocating for health care, and providing emotional support. Caregiving is labor intensive, with approximately one-quarter of those caring for cancer patients spending in excess of 40 hours a week providing these services to family or friends1. The level of care required by the care recipient is a major factor that influences the caregiver's life and health effects. Workers of cancer patients providing higher levels of support are more likely to report negative outcomes, less likely to be effective partners in the patient's care, and are more likely to postpone their own health care needs (Lou, 2013).
The stress associated with caring for chronically ill family members may result in stress for the caregiver. Home care providers i.e. spouses, children of elderly parents and parents themselves contribute a huge sum in the national economy. In most parts, the economic contribution or quantification of home care providers is not accounted for. However, along with the unseen/unaccounted for economic contribution, the work toll and the loss of opportunity and the physical and mental drainout is also substantial. Sometimes to provide for the sickly and the ailing proves to be both a huge physical and mental strain. In the case of professional workers, it has been well researched and documented in last few decades that this mental strain is much higher than those providing care for family members. Care provided for family members- especially partners who are mentally challenged/with non-physical disorders, the degree of mental strain are high to the point of the workers themselves at risk of being psychologically broken due to the high demanding situations both of physical toll complicated with non-professional work environment (lack of institutional caregiving equipment – both in terms of work-safety equipment and care providing equipment), safety concerns and behavioral issue. The physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver (Emslie, Browne, MacLeod, Rozmovits, Mitchell, & Ziebland, 2009).
Respite is the service most often requested by family workers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family workers who make this possible. Without respite, not only can families suffer economically and emotionally, workers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family workers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non-workers (Brittain, & Shaw, 2007).
To date, research on death attitudes have been conducted primarily with samples of college students and healthcare professionals, and studies of the caregiving experience have ignored the effect of death attitudes among family workers. The present study sought to link these two bodies of literature by investigating to which death anxiety can be associated with type of caregivers (health workers and relatives of patients) and gender of caregivers.
1.2 Statement of the Problem
Workers of persons live in a state of constant change and disruption of everyday life (Prorok, Horgan, & Seitz, 2013). These individuals consistently show high incidence and severity of burden, depression, and physical health deficits throughout the years of caregiving (Papastavrou, Charalambous, Tsangari, & Karayiannis, 2012). Caregiver burden is known to increase as sickness becomes more severe, and for workers of loved ones with any disease process, the end of life is known to be a time of increased grief and burden. Yet, despite continued evidence that this population requires increased support compared to other diseases, workers have limited access to end of life support programs such as hospice care (Miller, Lima, & Mitchell, 2010).
Many qualitative studies have explored the overall experience of caregiving and quantitative studies explore interventions to improve the caregiving experience. Few interventions show consistent results, and service use remains low even for those interventions that are successful despite reports of high unmet need among workers (Phillipson, Magee, & Jones, 2013). There is a lack of qualitative research on the experience of caregiving at the end of life. Since most workers have limited access to end of life support or do not seek formal support to meet their needs, it is critical to understand how they process the challenges they face. In the present study, the research proposed to examine the comparative analysis of death anxiety among health workers and relatives. The following research questions were ascertained;
1. Is there a significant difference in the level of death anxiety among health workers and relatives of patients?
2. Is there a significance gender difference in the level of death anxiety?
1.3 Purpose of the Study
The purpose of this study was to explore the comparative analysis of death anxiety among health workers and relatives. However, the specific aim of this research is as follows;
1. To examine the difference between health workers and relatives of patients on death anxiety
2. To examine gender difference in death anxiety
1.4 Relevance of the Study
The relevance of this study can be appraised from both the theoretical and practical aspect. This study is relevant to education and seeks to contribute to knowledge in areas that health workers and relative of patients play a significant role in health care of patients in Hospitals. This research work, serve as a data bank for researchers in these areas of study. The result of this study provides information that can be used in designing programs aimed at controlling stress, depression and death anxiety among health care givers and relatives of patients. The result is beneficial to guidance counselors and professionals who have to deal with depression and stress problems in the society and further studies in this field. Apart from that, researchers and health practitioners would also update their knowledge through the results of this study.
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