Introduction
It is not a surprise to meet a person with chronic illness in the modern world. Bad nutrition, awful environment (air people breath and water drink), constant stresses, too hush life and other factors are the main reasons for the chronic illnesses occurrence. The pain any chronic illness causes may never be compared to anything except for the experience of grief and loss related to the feeling of the nearest bereavement induced by person’s dying. The main purpose of the literature review is to conduct a research on the chronic pain caused by illness and the experience of loss; great many of different sources are going to be considered which are aimed at evaluating the various opinions on the problem with the identification of the most crucial and influential aspects of the situation.
The main characteristic aspects of chronic pain and the feeling of loss
Sage, HELIN. Newton-John and Gedd (2008) define chronic pain as “any pain that has persisted on a more of less daily basis for more than 3 months, or for longer than the expected healing time for body tissues” (p. 199). The authors state that the persistent pain is not the only problem the chronic illnesses have and refer the readers to the emotional suffering, and social and occupational troubles.
MEDLINE, EBSCO. The loss connected to the chronic illness may be defined in a number of different ways. The loss may be identified as “a reduction in symbolic or physical resources in which a person is emotionally invested” (Gatchel, Adams, Polatin, & Kishino, 2002, p. 100). The loss may be also specified as the one that is “produced by an event that an individual perceives to be negative, and results in long-term changes to his/her cognitions, relationships, and social environment” (Gatchel et al, 2002, p. 101). Furthermore, some scholars identify the loss as a major “if it has a lingering impact on a person’s consciousness and continues to affect his/her life long after the initial occurrence” (Gatchel et al, 2002, p. 101).
Academic Search Complete, EBSCO. Gordon (2009) identifies one more type of grief related to the relative death, chronic sorrow and explains it “as a normal grief response associated with an ongoing living loss that is permanent, progressive, recurring, and cyclic in nature” (p.115). It is crucial to notice that such sorrow is mostly connected to the situations of children’s death when parents cannot face the reality and continue living in the past.
Feeling of loss in relation to relatives
Sage, HELIN. Demmer (2001) research the problem of AIDS treatment in the modern world. The main idea of the article is that modern achievements allow people live longer with the terrible disease. Still, it is rather hard to know about the problem and be able to do nothing. The mortality rate because of AIDS is rather low for now, still, those who know their relatives’ destiny cannot remain calm and enjoy life as before. Those who have lost loved people because of AIDS feel injustice and great disappointment mixed with grief. Demmer (2001) says that “there is the danger that, with AIDS becoming a chronic disease, individuals who have lost loved ones to AIDS could become a forgotten group with grief issues” (p. 35).
CINAHL, EBSCO. Roy (2001) examines the chronic disease and pain in older age. The research results in unexpected information. The spouses who performed the roles of the caregivers for their chronically ill beloved people almost find it stressful because of constant psychological pressure. This leads to the increase of mortality among caregivers without an apparent cause. Moreover, Roy (2001) manages to identify the main reasons for grief in case of relatives’ chronic illness, (1) “an inability to accept the death of a loved one”, (2) “persistence of intense grief attempts to communicate with the dead person”, (3) “persistence of physical symptoms such as loss of appetite, sleep disturbance, aches, and pain”, and (4) “severe depression with suicidal thoughts or actions” (p. 73). The level of the influence of one of those reasons may vary, depending on different factors that should still be researched.
EBSCO. Miyabayashi and Yasuda (2007) conduct a comparative research on the problem of relatives’ feelings concerning a number of situations, namely suicide, accident, acute illness, shorter and longer illnesses. The comparative analysis is conducted from the following perspectives, depressive mood, general health condition and grief. It is significant that the consideration of all those cases shows the same physical distress, while the emotional condition differs greatly. Being interested in people’s grief and experience of loss caused by chronic disease people suffer from, it is crucial to state that the outcome rates in the group with chronic illness patients are significantly lower than in those groups with unnatural and unexpected deaths. In conclusion, the authors of the article make a prediction that the low results in the chronic illness group are related to the relatives’ anticipation and expectation of the nearest death. The data is collected for the following symptoms, somatic, anxiety and insomnia, social dysfunction, severe depression, cherished reminiscences, alienated feeling, mood stability and adaptive effort (Miyabayashi & Yasuda, 2007).
Academic Search Complete database, EBSCO. Lewis (1983) defines the grief connected to the chronic illness as a “little dying” that is the repeated in a number of times on the way to the “final dying” (p. 8). The author also accentuates that the grieving losses are obligatory and people must come through the period of time they are present in. The pain and experience of loss helps people move to the other stage, the rehabilitation and acceptance, “grieving is necessary to relinquish one stage of live to move into the next” (Lewis, 1983, p. 10).
MEDLINE, EBSCO. Gilliland and Fleming (1998) conduct an interesting research comparing a number of situations. The focus of their exploration is considered to be on the group of spouses who experienced grief by “terminally-ill patients prior (anticipatory grief) and following the death (conventional grief)” (Gilliland & Fleming, 1998, p. 541). The results are also compared with those of the other two groups, the spouses with chronic disease and those with the satisfactory health. The factors that could influence the problem are contemplated and the conclusion appears to be unexpected. The anticipatory grief stirs up anger, atypical grief and the cases of loss of emotional control (Gilliland & Fleming, 1998).
MEDLINE, EBSCO. Boss and Couden (2002) explore the problem of the ambiguous loss. The term is rather specific and the authors define it as “a situation where a loved one is perceived as physically present while psychologically absent, or physically absent but kept psychologically present because their status as dead or alive, dying, or in remission, remains unclear” (Boss & Couden, 2002, p. 1352). People suffering from ambiguous loss because of relative’s chronic illness that is impossible to cure remain in constant stress as have to hold two ideas simultaneously, that the person has already died (there is no any possibility to prevent him/her from death) and that the person is still alive, still here. People experience the following feelings and reactions in the situation, confusion, freezing, the inability to prevent family roles from reorganization, the search for fair and justice, and physical and psychological exhausting (Boss & Couden, 2002).
ProQuest, EBSCO. Murray (2003) raises a problem that can be the basis for a thorough research. He is sure that cultural views and beliefs influence the level of grief and bereavement greatly. Thus, making an example of impoverished cultures where the death of children and infants is considered as something inevitable, the grief does not last long. Such attitude is not understood by most Western cultures, where the death of a child is the greatest loss even occurred. This difference also influences the stages people have to come through to the final one, acceptance.
Experience of loss and grief in the relation to dementia patients
Sage, HELIN. Lindgren, Connelly and Gaspar (1999) offer the examination of the feelings of grief and loss of the dementia patients’ relatives. The authors mostly examine the attitude to patients with Alzheimer. The focus of the research is the duration and the rating of distress at the situations when caregivers are informed about their relative death twice. The research shows that while being informed about the nearest death of the relative with Alzheimer for the first time the experience of loss and bereavement level is much higher than that on the news about the nearest death for the second time. Still, the second notice influences more caregivers’ understanding of the nearest changes related to the absence of the beloved person.
Sage, HELIN. The reaction of caregivers to Alzheimer disease in one of their relatives is also considered by Adams and Sanders (2004). They highlight that those who take care of the patients with progressive dementia are subjected to “depressive symptoms and other mental and physical health problems” (Adams & Sanders, 2004, p. 195). Adams and Sanders (2004) conduct a research to evaluate caregiver’s condition on the early, middle and late stages. It is concluded that dealing with dementia patients, caregivers are more depressed and experience more grief at the last stage of the patient’s illness. Furthermore, the caregivers at the last stage of the disease of their relatives mention the losses “related to the interpersonal relationship with the care recipient and how radically it had changed over the years of Alzheimer’s disease” (Adams & Sanders, 2004, p. 202).
Sage, HELIN. Ashton (2008) is sure that there is a great difference in the professional and home care of the patients with chronic illness. Ignoring the fact of the medical facilities and necessary skills, it is crucial to mention that bereavement and grief are the main feelings relatives experience in the relation to the sick person. In spite of the fact that grief has been usually rejected as the core feeling in the relation to the sick relative, Ashton (2008) made an attempt to identify five main human dimensions of grief patients and caregivers usually suffer from, namely cognitive, physical, socially, emotionally, and spiritually. Cognitively, people are unable to perceive the disease as it is and feel confused and disoriented. Physically, they may feel some complications in sleeping and eating abilities along with repetitive pains and aches. Socially, most patients withdraw from surrounding world and friends, and try to get ready to die. Shock and denial are the main emotional conditions both the patients and their relatives feel. The spiritual condition also lacks inspiration as most people suffer from the feeling of being abandoned by God (Ashton, 2008).
Sorrow and loss families experience when have a child with chronic disease
Sage, HELIN. It is a great sorrow to know about the nearest death of a child from the chronic disease. The problem is that parents have to make their child believe that nothing wrong is happening. Langridge (2002) makes an attempt to consider two types of parental grief, namely time-limited grief and chronic sorrow. The central characteristics of time-limited grief are that it is accomplished in five stages, “denial, anger, bargaining, depression and acceptance” (Langridge, 2002, p.159). Parents do not stop thinking about the problem and they still fell grief, but the pain is not so sharp as they accept the reality as it is. Chronic sorrow has four main characteristics, “a perception of sadness over time in a situation with no foreseeable end; the sadness has a cyclical nature; it is triggered either internally or externally bringing to mind the person’s losses or fears; it is progressive and can intensify” (Langridge, 2002, p. 159).
SocINDEX, EBSCO. Penzo & Harvey (2008) examines the feeling of loss and grief parents usually experience while raising children with different mental disorders. Continuing the research conducted by Langridge (2002) the authors deeply reflect each stage of parental grief and loss, coming to the conclusion that the level of sorrow parents experience of different stages, namely (1) denial, (2) anger, (3) bargaining, (4) depression, and (5) acceptance of the loss, is absolutely different. The final stage may never be reached if parents do not readjust the hopes they have and do not restructure the expectations they possess in the relation to their child.
The experience of loss and grief after consideration of personal chronic diagnosis
Sage, HELIN. Thannhauser (2009) tries to identify the personal feelings of adolescents who get to know about their diagnosis, multiple sclerosis. The scientist stresses that the adolescents’ experience is a “cyclical movement between grief and acceptance” (Thannhauser, 2009, p. 773) supported with numerous losses. The author is sure that a person chooses one of the schemes for behavior. On the one hand, sick adolescents may experience loss, grief, and then the acceptance. On the other hand, the way to acceptance may be longer and can be accomplished in a number of the following stages, “medication–peer tug-of-war”, “shifting friendships”, “finding supportive relationships”, “dealing with others’ worry”, “talking about multiple sclerosis”, and “acting normal” (Thannhauser, 2009, p. 772).
CINAHL, EBSCO. The other classification is offered by Ahlström (2007) who manage to identify, by means of inductive analysis, eight categories of people’s experience of loss, namely loss in bodily functions, relationships loss, autonomous life loss, loss of the life imagined, loss of roles, loss of activities, loss of identity, and the loss of uplifting emotions. Chronic/episodic sorrow was considered by means of deductive analysis. The experience of losses is provided in different frequency and of various power rates. Thus, the loss of identity is the most rarely met answer though being the most severe feeling. The results obtained while the examination are influenced by a number of facts, determined as the research limitations. The ethical issue is one of the main potential problems in the research as the emotional effect of the questions could cause pain (Ahlström, 2007).
Academic Search Complete, EBSCO. The loss may be related not only to the personal emotions but also to some material sides of life, such as the feeling of loss in relation to workplace or friends, as well as to the previous life that was painless. Sagula and Rice (2004) conduct a research using the mindfulness meditation program and prove that the program helps to cope with the difficulties created by the current condition, chronic illness. The grief and loss should be integrated, not defended. This will help pass the stage faster and with less mental anguish.
CINAHL, EBSCO. Richardson, Ong, and Sim (2006) conduct a research focused on the experience of those who live with chronic pain. The reaction of people to the fact that the disease they possess is chronic and may lead to death is different and may be divided into three groups. The first group gathers people who are optimists and still hope for something better. The second group combines those who think only about the worst outcome and do not want to continue normal life leading. The uncertainty and fear is the other feeling that is predominant in the third group. People are afraid of the future as they are not certain about the length of their tortures.
EBSCO. The problem of bereavement and loss in patients with intellectual disabilities is debated by Brickell & Munir (2008). The concept of traumatic grief is evaluated and the main conclusion of the research is that those patients with intellectual disabilities are more subjected to it on the basis of the experience of the secondary loss, the existence of some barriers that prevent those people from communicating their losses, and the inability to find the meaning of the loss.
CINAHL, EBSCO. Clements, Focht-New and Faulkner (2004) evaluate the importance of patients’ acceptance of their nearest death or constant pain. Having focused the research on people with developmental disabilities, the authors state that it is crucial for such patients to cope with the problem, to accept the grief they experience and do not react too emotionally on the diagnosis in future. The research shows that “disabled persons can articulate their perceptions and feelings about traumatic experiences, death, and the subsequent impact of the events that follow” (Clements, Focht-New & Faulkner, 2004, p. 799) and it positively affects their condition.
Conclusion
In conclusion, the literature review of a number of sources was conduced where different topics were considered. The research is focused on the problem of caregivers and family members’ experience of loss, grieve and bereavement connected to the chronic illnesses in relatives, children, people with dementia as well as the same feelings considered after the personal experience of inevitability. The level of grief and loss depends on different factors, but most scientists agree that to cope with the problem, people should accept it as inevitability and continue living, no matter how difficult and painful it is.
Reference List
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Ahlström, G. (2007). Experiences of loss and chronic sorrow in persons with severe chronic illness. Journal of Nursing & Healthcare of Chronic Illnesses, 16(3A), 76-83.
Ashton, J. M. (2008) Bereavement Care in Home Care and Hospice. Home Health Care Management & Practice, 20(5), 394-399.
Boss, P., & Couden, B. (2002). Ambiguous loss from chronic physical illness: clinical interventions with individuals, couples, and families. Journal of Clinical Psychology, 58(11), 1351-1360.
Brickell, C., & Munir, K. (2008). Grief and its Complications in Individuals with Intellectual Disability. Harvard Review of Psychiatry, 16(1), 1-12.
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Thannhauser, J. E. (2009). Grief–peer dynamics: understanding experiences with pediatric multiple sclerosis. Qualitative Health Research, 19(6), 766-777.