A serious illness, such as an oncological illness, without a doubt, represents a great burden that affects not only the physical side of a person, but also affects his psyche (spirit and soul) and his relationships. According to the available statistical data, the number of people with an oncological disease is growing worldwide (1).
The collection of data in the Czech Republic is mandatory according to the law and at the same time absolutely necessary for planning the need for oncological care and evaluating its benefits (2). From the point of view of the epidemiology of malignant tumors, the Czech Republic is among the most burdened countries in Europe and the world. Since 1995, the mortality rate has been stabilized in the long term. Nevertheless, due to the increasing incidence, there is a constant increase in the share of the number of oncologically ill persons in the number of all persons in the monitored population. Due to the global trend, the decreasing age of patients and the emerging tumor duplication of the disease, it is a clear assumption that there will be an increasingly frequent occurrence of oncologically ill or cured patients and their relatives. All these people have specific needs in the field of psychosocial support and subsequent integration.
In the global context, social work with cancer patients is becoming a standard part of cancer treatment. Oncological care for adult patients in the Czech Republic is concentrated mainly in Complex Oncology Centers (KOC) and Hemato-oncology Centers (HOC). KOC and HOC are medical facilities or their associations that meet the criteria declared by the Czech Oncological Society (ČOS) as part of their care. In addition to the KOC and HOC, of which there are approximately 19, other inpatient and outpatient facilities (3) also participate in the care of oncological patients.
ČOS strives to fulfill the National Oncology Program (4) (NOP), the goals of which are aimed at reducing the incidence and mortality of cancer, improving the quality of life of cancer patients, and rationalizing the costs of diagnosis and treatment of cancer in the Czech Republic. However, in the field of practical tasks that are supposed to fulfill the goals, there is no mention of improving the quality of life of oncological patients, so the fundamental question is whether oncological patients or their relatives have the opportunity to find the necessary support and help.
Psychosocial support, as understood by the authors of the article, is a set of activities that positively influence the relationship between health and illness in our case of an oncological patient. This includes, for example, issues of personal well-being in relation to health, psychological resilience, vulnerability, coping with workload and stress, as well as issues of the influence of socioeconomic status on health and quality of life, issues of social support, health inequalities and others. Psychosocial support of oncological patients has a demonstrably positive effect on the acceptance and course of oncological treatment, the patient's length of survival and the quality of his life with the disease or his life after the end of active treatment, including end-of-life situations, and reduces health care costs. (5) And social work has an irreplaceable place in psychosocial help and support.
In the current situation, it can be assumed as a valid consideration that the oncology patient, as a client, will use various already available services in order to fulfill his needs arising or aggravated by the disease. However, the fragmentation of the services offered and their uneven coverage creates a number of difficult situations leading to impaired access to services, and thus to an impaired quality of life. An oncological patient undergoing long-term treatment, like his loved one, often finds himself in a hard-to-define uncertainty and there are not many places to turn for quality, locally available advice. Not to mention services that would work specifically with the complex needs of this ever-growing group of clients. These are services that would be sufficiently continuous and high-quality, would include professional social and social health counseling, crisis intervention, activation and psychological or psychotherapeutic intervention. At the same time, the situation itself is very complex, when the patient or his loved ones must recognize their needs and define them as those that are fulfilled by some service in the field of psychosocial assistance. Social work, which moves in the field of support for people with oncological diseases and their loved ones, certainly carries with it specifics.
What services can an oncological patient or a loved one use in practice? In most oncology outpatient clinics, we cannot find a social worker, they usually work in oncology clinics exclusively in inpatient areas, where many patients do not even have to go during their treatment, accessibility for loved ones is essentially zero. Outside the hospital, mainly patient organizations working with oncological patients usually focus on cancer. Relatives definitely have access to patient organizations, but due to the nature of the focus, there is no access to professional care. Among the most famous are Mamma Help, Lymphoma Help and others (6). It will be very difficult to find a specialized professional social or therapeutic service aimed at helping cancer patients and their loved ones. We can include organizations such as Amelie, Fr. s., or Gaudia against cancer. So we return to the question of whether a person in a crisis or long-term difficult life situation associated with an oncological disease is even able to adequately fulfill his needs.
And what are the specifics of social work with cancer patients and their loved ones? Psychosocial support requires a multidisciplinary approach, so it is primarily a matter of the need for a broader professional perspective in related fields – psychology, psychotherapy, healthcare, ethics, law. This requires the diversity of the needs of the oncological patient or his relatives, which change during the course of the disease and require a good evaluation and targeting of the intervention by the worker. Emphasis is also placed on the quality of the information provided, its practical usability and the method of presentation, which should correspond to the needs of the target group. The latter has a very wide age range and, due to the changing state of health, has special demands on the flexibility of the service and the worker in it. Special demands are therefore also placed on the personal equipment of the social worker, who should be highly resistant to frustration, should be open to themes of proximity to death, dying, pain, uncertainty, feelings of guilt, anger, etc., should control their emotions, communicate well. Considering the requirements for the ability to methodically work with information, generalization and presentation, he should also be creative and inquisitive.
The usual activity of a social worker working with oncological patients and their loved ones is: • crisis intervention, • counseling interview, • working with laws, especially in the areas of health and social care, • work with information from the field of health science and health care, for example individual specifics of diseases and their treatment procedures, continuity of procedures in the health care sector and beyond, • operational search for information, • work with ethics – knowledge of patient rights, ethical codes, procedures, • teamwork and supervision work, • methodological and publication work.
A special area of the specifics of social work is the complexity of financing a social worker. If he works in a healthcare facility, it is difficult for him to find funding from sources that are primarily allocated in the healthcare sector. If a social worker works in social services, then it is difficult for him to find a way of financing, if his clientele is defined only by a medical indication, and not, for example, by the definition of disabled. On a commercial basis, social work is practically not possible at all.
When it comes to prospects in the field of social work with oncological patients, it seems that some complex oncology centers would be interested in psycho-oncological and psychosocial care. It is a question in what form it would be possible for social workers to work in healthcare facilities. Would they have the opportunity to work with the client throughout the course of treatment, that is, during outpatient treatment and after treatment? What part of the work could they dedicate to loved ones? How successful would multidisciplinary case cooperation be? If social work is not available in oncology centers, will it be possible to promote it to a greater extent in social service facilities? Will it eventually be possible to ensure the cooperation of experts and follow-up for the real provision of the needs of oncological patients and their loved ones?
So let's hope that it will be possible to find a system of care for oncological patients well in advance, which would serve us all with quality and flexibility, because the prospects for the increase in the frequency of the disease are not optimistic.
(The article was published in the magazine Sociální služby, issue 2/2013)
(1) Data from the Czech Republic are available on the website of the National Oncology Register (NOR) (2) The presentation of the epidemiology of malignant tumors in the Czech Republic is available to all citizens on the interactive portal www.svod.cz and comprehensive information can be found on the website of the Institute of Health Information and Statistics www.uzis.cz (3) You can find an overview of the network divided by region at www.onconet.cz (4) The NOP was prepared on the basis of the conditions and needs of the Czech Republic and in accordance with the conclusions of the World Health Organization. (5) Mallinger, Griggs & Shields, 2005, Stewart, 2001, Sweeney et al., 2007 (6) The umbrella organization of patient organizations is the Cancer League.
The Association of Social Service Providers of the Czech Republic is an independent association of direct social service providers pursuing their development and raising their level as a basic goal.
Professional magazine Social Services - 2/2013
The professional monthly Sociální služby is the most widespread periodical in the field of social services in the Czech Republic. Its publisher is the Association of Social Services Providers of the Czech Republic (APSS ČR), the largest professional organization uniting providers of all types and types of social services in the Czech Republic. Its membership currently consists of more than 720 organizations, which means over 1,600 registered services.
The magazine Sociální služby was created in 2009 as a result of the transformation of the former APSS ČR Newsletter. It is published ten times a year on 36-48 pages in A4 format in a circulation of 3,500-4,000 copies for approximately 16,000 readers from the ranks of providers, founders and users of social services, representatives of public administration, students and university teachers in both the Czech Republic and Slovakia.
More information can be obtained on the websites http://www.socialnisluzby.eu and http://www.apsscr.cz.
Orders for member organizations of APSS ČR are processed directly by the publisher or the editors at the address: APSS ČR, Vančurova 2904, 390 01 Tábor, Czech Republic, phone/fax: +420 381 213 332 or +420 606 832 551, e-mail: redakce@apsscr.cz