Social support for seniors with cancer
Introduction
Tumor disease is a general name for a group of diseases caused by the uncontrolled proliferation of tumor cells in various body organs and tissues. It is characterized by the emergence of malignant (malignant) cells that have gained the ability to penetrate into surrounding tissues (invasion), where they form distant tumors (metastases). Tumors of these characteristics are life-threatening (Kausitz 2003). Currently, we are witnessing that some types of tumors are already curable. This was made possible by technical progress in surgical treatment, where palliative procedures were replaced by radical operations with better survival prospects. Significant success has been achieved in radiotherapy not only thanks to the radiation technique, but also due to more appropriate fractionation of radiation doses. Antitumor chemotherapy significantly contributed to the improvement of treatment results (Klener 2002).
Biochemical, hematological, immunological and histological examinations are important in the diagnosis of cancer. The task of specialists is to determine the correct diagnosis as quickly as possible and with as little burden as possible for the patient. To determine the diagnosis, a combination of several diagnostic procedures is used in oncology, as in other branches of medicine. The first important step is a carefully performed anamnesis: family anamnesis - we find out primarily the occurrence of cancer in the family, personal anamnesis - focuses on data on premarital and marital sex life, on the number of births, pregnancies, on the lifestyle and habits of the patient and data on the presented disease, work anamnesis - work environment and risks, social anamnesis - marital status, housing conditions and others.
When establishing a diagnosis, it is essential to know the extent of the cancer. Determining the degree of progress is referred to as "staging". The TNM-classification, which enables the determination of the optimal treatment plan, helps reveal the prognosis of the disease and is a necessary prerequisite for comparing therapeutic results.
Oncological diseases have an increasing tendency in Slovakia. According to the Statistical Office of the Slovak Republic, the number of inhabitants over 65+ in 2016 was: 814,659, the aging index was 96.92, the number of deaths over 65+ was in 2014: 51,346, in 2015: 53,826, in 2016: 54,123. Men over 65+ in 2015: 27 462; women over 65+ in 2015: 23,364 persons.
The Ministry of Health of the Slovak Republic according to § 45 par. 1 letter a) of Act no. 576/2004 Coll. on health care, services related to the provision of health care and on amendments to certain laws as amended by Act no. 350/2005 Coll. issued the concept number 28172/2006 of the Journal of the Ministry of Health, Part 1-5 of January 25, 2007, Year 55, where it processes the content of health care in the field of geriatrics, defines the activity of Geriatrics as a specialized field that deals with health care for seniors (over 65 years of age).
When providing complex care for seniors, it is based on age-related changes in the organism, multimorbidity, subsequent fragility and reduced adaptive capacity of the old organism. It focuses on determining the functional status and potential of seniors and respects the impact of social factors on the health status of seniors and the social consequences of their illnesses. An important feature of geriatric patients is fragility (instability), which is manifested by a tendency to complications and deterioration of adaptation mechanisms.
Social support
Social support represents a measure of help in overcoming a given situation and is considered one of the most important defensive factors of health. Křivohlavý (2001) talks about four types of social support: instrumental support, informational support, emotional support, evaluative support. It can have a positive effect on people, especially in difficult life situations, and it can help in social life and in a person's overall life orientation.
Social support is one of the important factors involved in maintaining or stabilizing the quality of life of seniors. Most authors agree that social support manifests itself in several ways and represents an important pillar of mental and physical health, increases resistance to stress and "the will to survive life's losses and crises (Hartl, Hartlová, 2000). Mareš (2001) characterizes social support as a well-intentioned activity that is willingly provided to a person with whom the provider has a personal relationship, and this activity has a positive effect on the recipient either immediately or over time.
Social support can also be a source of positive and negative experiences - lowering of self-esteem, unpleasant feelings of inferiority, problems in interpersonal relationships. It is perceived primarily as moral support of the neighborhood, or as a specific form of non-material help. We also recommend trust and faith as factors that have a positive effect on our overall state of health. From regular practice, every doctor will confirm to us that people who trust him as a doctor and his therapy heal better and faster. Faith is first of all our personal decision for a certain focus of life, which can be oriented towards different goals, and what we believe plays an important role. We meet with faith and trust not only in the so-called secularized environment, but also in the religious area. According to Křivohlavý (2001), the results of studies show a direct connection between faith and life satisfaction, stress management, somatic illness, depression, biological immunity, etc. The author states that people who show the characteristics of the so-called of intrinsic (own) faith and Christian faith also rate the overall quality of their life higher. Faith gives us a higher level of self-esteem and provides the strength and resilience not to succumb to the difficulties of ordinary life.
Senior with oncological disease
The research was carried out in Slovakia1, approved by the Ethics Committee at the Faculty Hospital of the Central Military Hospital in Ružomberok: ÚVN-FN:18-23/2018, in the form of a questionnaire distributed at the Oncology Clinic.
The goal of the research was to find out respondents' opinions on the following topics: fears about the disease, emotions they felt after being diagnosed with oncological disease, problems that arose after being diagnosed, possibilities of satisfying needs, expectations of patients, their plans and dreams for the future. Intentional group, respondents of retirement age (men 62 years and older, women 60 years and older) with a diagnosed oncological disease.
The research group consisted of 29 respondents: 28 respondents were of retirement age and received old-age pensions. One respondent - a woman, was 61 years old and was still collecting her old-age pension; on the date of filling out the questionnaire, she did not have a valid decision from the Social Insurance Agency, thus she was included as a respondent not of retirement age. A total of 29 respondents, of which 13 are men and 16 are women. 10 respondents live in the city, 19 respondents in the village. Marital status: married (9), married (8), single (1), divorced (5), widowed (6). We were interested in the education of the respondents, where 10 respondents had a basic education, 10 respondents had a vocational-apprenticeship, 4 respondents had a complete secondary education and 5 respondents had a university education.
Oncological disease is difficult for the survival of the patient and his family, but it is also financially demanding, as evidenced by the individual answers of the respondents, where 11 stated that their financial status is low - but it allows them to satisfy basic needs; 15 respondents stated that their financial status is medium - average and only occasionally enables them to satisfy even higher needs. Three respondents stated that their financial status is relatively high, which allows them to meet all their needs. We were interested in whether the respondents knew their disease (diagnosis), based on the opinion that oncology patients should know their diagnosis, it should be communicated to them in an understandable way.
"In a certain sense, an oncology patient is still a patient throughout his life. There is a need for strict dispensary, regular check-ups, repeated and demanding diagnostic tests for many years after treatment. This fact determines the patient's psychological state, but also the patient's situation in the family and in society. It is certainly not easy to talk about the rights of the oncology patient and his family and to formulate them" (Siracká 2003).
Familiar with their diagnosis: (5) female respondents had CA of the breast, males of the bladder (2), CA of the prostate (2), CA of the testicles, one male. Two respondents only mentioned the general name "cancer". By second-level classification, we found out that they were men aged 62 and 64 with basic education, living in the village, single. One respondent could not determine his diagnosis exactly, deciding between bladder and intestine. We were interested in the age (calendar) in which the oncological disease was diagnosed, the most at 62 years of age (5), at 67 years of age (4) respondents.
Evaluation of research questions Respondent values In this question, we were interested in which value is the most important for the respondents. They could choose three options from the seven values we proposed. The value of health was chosen by 26 respondents, family by 22 respondents, faith in God and God's presence in their lives needed by 12 respondents.
Anticipated changes in respondents' lives In this question, we were interested in whether they would change something in their lives, where: 18 respondents would not change anything in their lives, they are satisfied with their lived life, there was no significant difference between men and women. 9 respondents would make changes in their lives, five of them men, whose social status was divorced or single. Two stated other: they would make changes e.g. choosing another partner, becoming a parent.
Reception of diagnosis report The topic of oncology patients' rights is associated with a number of open questions not only from patients, doctors and the general public. Their solution is not easy, because it is largely complicated by several factors such as: cultural, social and economic level of society. In what direction should the efforts leading to the improvement of this situation be directed? It seems that an open discussion of all concerned should be the first step, it should be subjected to an analysis on the basis of which a strategy towards solving the problem could be considered. Legalizing the rights of oncology patients is a long process, we start from the Universal Declaration of Human Rights, from the rights of patients in the Slovak Republic. One of the serious problems is the dilemma - the patient has the right to know, but does he also have the right not to know his diagnosis? It is the art and duty of doctors to be able to correctly evaluate the experience of a specific patient when formulating information. It is very important to create a positive relationship and cooperation in the treatment of the patient, which is radical and long-term and can be associated with several accompanying difficulties. It is important to find a way to inform the patient about his diagnosis. In Slovakia, awareness of the disease varies between complete or partial ignorance of the diagnosis (Siracká 2003).
Therefore, we were interested in the opinion of how the respondents we approached accepted this news about their diagnosis. They could choose three answers from the eleven we suggested. We hypothesized that the respondents would state as the first phase after the announcement of the diagnosis, the phase of shock and anger, as described by Elizabeth Kubler-Rossová (1972): 21 respondents asked themselves the question What now? If we compare their answers according to E. Kubler Ross, they were in the third phase. We can assume that the reception of the disease is directly dependent on the age of the patient. 16 respondents were in the first phase, i.e. "I felt helplessness and overwhelming sadness. 12 respondents were surprised that this could be true". And "I didn't know what was going on."
This was followed by another question in which we were interested in what the oncological disease began to limit them in: 23 respondents said that the disease is a reason to fear for their life and health, 19 respondents said that the disease is a source of greater care for their loved ones, and 11 respondents said that the disease forced them to understand a sick and suffering person more deeply.
Current status of acceptance/non-acceptance of own illness We were interested in the patients' current state of acceptance/non-acceptance of their illness, where they could choose three options in their answers. The current attitude towards the disease is influenced by several factors. Among the most important are: the degree of functional limitation, the duration of difficulties, the age of the patient, the intensity of pain, the level and degree of realization of life plans, the financial situation, the relations of the environment and especially the family, the family environment to his illness, the ability to adapt to the inevitable change in the way of life. The patient has a problem coping with several restrictions that are a consequence of the oncological disease and the related psychosocial and economic consequences.
From the answers, we found that 16 respondents have accepted their illness, 14 respondents are looking for answers in prayer, 10 respondents have deepened their relationship with God, 9 respondents are trying to accept their illness, 6 respondents have resolved conflicts with people, 6 respondents feel depressed. It is interesting to note that I have not accepted and probably never will accept this disease in three respondents.
Coming to terms with reality takes place on three levels: 1. Adaptation to life in the disease with the possibility of normal activities, without significant conflicts. 2. Resignation with little or no hope of improvement, adaptation to chronic disability with increased conflict. 3. Obvious depression or protest against the condition, difficulty in helplessness, feeling of unhappiness and loss of life balance.
We were interested in the respondents' opinion on how they understand their illness: according to the answers, 15 respondents did not take into account the emerging symptoms of the disease and illness. This figure is interesting, as there are regular preventive examinations in the Slovak Republic, which are fully covered by public health insurance. But it is always up to the citizen to decide. At the national level, there are regular public events focused on specific oncological diseases, e.g. Daffodil Day is a unique charity fundraiser of the Cancer League and was held for the 22nd time in 2018. Throughout the year, the Cancer League prepares projects and programs to help patients with their specific problems, situations and challenges. In addition, it takes care of prevention and awareness of the entire public, supports medical facilities, hospitals, other civil associations and research in the field of treatment of oncological diseases.
We investigated the survival of the disease with question no. 7., where respondents could choose three options. The psychological experience and behavior of a person with an oncological disease manifests itself during the course of the disease in that it is related to the subjective processing of whatever it perceives - one's own body, changes in individual systems. Experiencing is related to the entire psychological activity of a person, which can have both negative and positive effects in the process of diagnosis, treatment, and rehabilitation. 17 respondents show sadness during the process of disease treatment, seven show fear. By secondary sorting, we found out that these are women - mothers.
We asked the respondents a question in which we asked about their concerns, they could choose three options.
Respondents' concerns 16 respondents are most concerned about physical pain and suffering. The answers are not surprising to us, as pain is an unpleasant sensation and emotional experience associated with actual or potential tissue damage or described in terms of such damage. Pain is one of the most common symptoms of diseases, it is a complex phenomenon that has a neurophysiological basis, it is very often accompanied by unpleasant feelings, it is experienced uniquely by each person, it is difficult to precisely define, identify and measure. Pain is one of the most feared and at the same time the most common symptoms of oncological disease.
Oncological pain occurs in approximately 35-45% of patients at the time of diagnosis, in 60%-70% of patients in an advanced stage of the disease, and in 75%-90% of patients in the terminal stage of cancer. It represents an important factor that affects the quality of life of cancer patients. Inadequately treated pain leads to insomnia, fatigue, depression and a feeling of exhaustion (Hudáková et al. 2008).
Cancer pain is defined as “prolonged or recurrent pain associated with a continuous nociceptive stimulus and influenced by psychological factors.” It is also referred to as total pain (Blumental-Barby et al., 1988).
We know acute pain - it is defined by a duration of up to 6 months, it is a short-term signal that tissue damage has occurred, and chronic - it is defined by a duration of more than 6 months, it can be a permanent pain, at certain regular and irregular intervals (migraines, back pain). It is often associated with psychopathological phenomena. Pain questionnaires are used to assess pain, which are among the more complex and complex pain assessment tools. The Brief Pain Inventory (BPI), which focuses on the patient's pain during the last 24 hours, is most often used to assess oncology pain2. The questionnaire expresses the interference (mutual influence) of pain intensity with other functions (from the field of psycho-social and physical activity).
The McGill questionnaire is also used, which is divided into four parts. In the first, the sensory and emotional aspects of pain are determined, in the second the time course of the pain, in the third the intensity of the current pain is evaluated. The questionnaire is supplemented by a topographic examination, which helps to determine the location of the pain. There is also the Edmon evaluation system for other symptoms accompanying pain (restriction of activity, nausea, depression, anxiety, drowsiness, loss of appetite, dyspnea), which helps to evaluate the quality of life of a patient suffering from pain (Hudáková et al. 2008).
Other pain questionnaires that are used are the MPQ – sensory and emotional aspects of pain], time course of pain], determination of current pain intensity], topographic examination. WHYMPI-52 - related to pain and 30 different daily activities. PASS-40 items - how much the patient] is afraid of the pain] that afflicts him. MMPI - there is a certain relationship between the personality dimension of hypochondria, depression and hysteria on the one hand and pain on the other.
13 respondents mentioned another fear: humiliation, lack of intimacy, reduction of their own dignity. The given answers clearly correspond to managing activities in self-sufficiency, which is focused on taking care of oneself, one's household, contact with the social environment. In order for the self-sufficiency of a person with an oncological disease to be fulfilled, we agree with the author Repková (2017, p. 45): "The right to everyday life is the provision of such access for a person in the conditions of ordinary (everyday) life, which in the given socio-cultural and economic context is comparable to the access of persons of the same age, gender or other relevant characteristics. This is access to conditions that support full social inclusion a person in natural socio-economic relations towards his own development, the development of his community and the wider community. It is based on the fact that the right to access to conditions supporting social inclusion cannot be affected (threatened) or questioned by a person's current life situation."
7 respondents had other concerns about the next treatment process and the lack of effectiveness of the process and treatment, responsibility for the past life was expressed by 8 respondents, loss of hope was expressed by 5 respondents.
Patients' expectations regarding help and support A social network is very important for an individual with a diagnosed disease, it helps him to cope with various problematic situations he encounters. We were interested in who they expect help, support and social support from, which is an important part of an individual's social relationships. Social support is a measure of help in overcoming a given situation and is considered one of the most important defensive factors of health
Křivohlavý (2002) talks about four types of social support: • Instrumental support – this is a specific form of assistance, e.g. by providing financial or material assistance. The initiative to help comes from a person who, of his own free will, decided to help the disabled person himself, concretely, materially. • Informational support – the individual is provided with information that can help him orient himself in the situation he has found himself in. • Emotional support – a person in distress is provided with emotional closeness (love, compassion) in an empathic way, is given hope, is given a hand when he falls into hopelessness, depression. • Evaluative support – a person's positive self-evaluation and self-confidence are strengthened, their efforts to self-regulate are supported (Kamanová 2013).
The results of the research revealed that 16 respondents expected help from institutions providing health and social care, 8 respondents expected it from doctors and children. The fact that 7 respondents expect help from a social worker is important for us. By second-level classification, we found out that these were the respondents who received some cash allowance to compensate for severe disability.
Categories examined: physical, psychological, spiritual, social and societal areas In other questions, we focused on the examined categories: physical area, psychological and spiritual area, social and social area.
Physical health can change during the course of the disease, depending on its course, the functioning of individual organs and organ systems. We also consider it an indicator of biological aging/rate of biological old age, regardless of age. The physical area is naturally a consequence of oncological treatment. All types of antitumor treatment carry the risk of side effects, so we were interested in the current and potential need in the physical area: 12 respondents do not want to feel chronic pain, they want to gain control over their life.
The focus of socio-psychological research in the field of interpersonal relations is the concept of social interaction. It expresses the mutual relationship of people in joint activity. With this question, we asked about the psychological and spiritual needs of the respondents, where 15 respondents need to spend more time with their family (there was no significant difference between men and women), and 15 respondents need an honest conversation about their state of health. Social interaction is a process of mutual relations and contacts between individuals and groups, which ensures the socialization of personality, but also the existence of society and its components. From a socio-psychological point of view, an individual as a personality is, on the one hand, a product of social interactions, but on the other hand, he is also an active creator of them. On the basis of interactions, social relations are created and shaped, which specifically the respondents need in the social and social sphere. Social relations between individuals are not the result of individually experienced sympathies or antipathies in interpersonal relations, they are the result of the objectively existing integration of the individual into the structure of society. Psychological relationships arise when two or more individuals accept each other. Typical forms of interpersonal relationships are: positive cooperation, antagonistic competition, indifferent interference, positive competition, antagonistic cooperation (Lokša 2007).
Organizing material matters related to existing material resources was mentioned by 12 respondents. Social needs are very closely related to social contact and social perception. A person has a wide range of social needs, the most important of which are: the need for identification (identification), the need for prestige, the need for affiliation, the need for knowledge, the need for influence...
Despite the fact that the respondents have been diagnosed with an oncological diagnosis and were hospitalized in the oncology department, they knew about their disease, we asked them a question about their desires, where 10 respondents want to participate in a family celebration, 7 want to be active in a religious service (in church), 5 want to visit their favorite place, experience a trip that they could not make due to their poor health. Subsequently, we asked them an open question in which we asked them: "What do they dream about?", "What do they wish for the most?", "What else do they expect?" In this question, the respondents clearly stated that "I would like to be healthy..... see my grandchild.... apologize for my sins.... have no pain...... walk for a long time on my own feet...... I don't want to bother anyone..... .dreams are no longer real........ I want to die in my sleep...... honest words...... know the truth..."
Conclusion
We agree with Levicka (2002, p.70), who states that the main goal of providing social support is to facilitate coping with a specific adverse situation. The individual interprets the assistance provided in his own way. To understand and accept the offered help, or the provided social support is greatly influenced by a person's previous personal experience. In our contribution, we processed the opinions of respondents with oncological disease on the following topics: fears about the disease, emotions they felt after being diagnosed with oncological disease, problems that arose after finding out the diagnosis, possibilities of satisfying needs, their expectations, their plans and dreams for the future. It clearly follows from the results that the respondents, as oncology patients of retirement age, are not worried about illness or death. They are active during treatment, respond to the instructions of the attending physician, and follow the treatment regimen. They are aware of their reserves regarding their own health, which they should have filled in their productive age. They now lack the inner strength to saturate their needs, but despite this they have their dreams and desires, where the answers show that they want to be self-sufficient for the rest of their lives and do not want to be a burden to others, they want to have secured material resources. We processed individual types of social support: instrumental, informational, emotional and evaluative.
Author: doc. PhDr. Irena Kamanová, PhD., MHA. Bibliography
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1 The research was carried out within the framework of the monograph, entitled: (NOT) KNOWN SENIOR ONKOLOGICZNY selected zagadnienia z psychoonkologii w geriatrii (badania polsko-słowackie). 2 Brief Pain Inventory – BPI (Brief pain assessment, abbreviated form). The questionnaire consists of nine questions, using unstructured (open) and structured (closed) questions. The BPI was developed by Charles S. Cleeland in 1989 as a tool for assessing cancer and chronic pain. The BPI is a concise, simple and easy-to-use tool that has been validated in multiple languages. It allows to assess the location of the patient's pain, the worst, weakest, average pain in the last 24 hours and currently felt pain, the use of painkillers, or the amount of relief after taking the drugs and the impact of pain on daily functions. BPI uses simple numerical scales from 0 to 10. The advantage of the tool is that it is time-saving and easy to administer. Reliability of the BPI ranges from 0.77 to 0.91.