Note from the site editor regarding copyright. Sometimes the public interest may override copyright. When I found this document, I, who suffer from peripheral neuropathy from HIVI saw in it the Grail. The paragraph stating that unauthorized reproduction is prohibited is kept in the text.
I did what a good Christian would do, although I did not recognize in me a good Christian. I sent three email messages asking for permission to post such a precious gem and waited for 5 (five) weeks. The answer was "silence."
My first marriage had more low times than highs and I remember that in one of the high moments Teresa gave me a long lecture about what was right and what was wrong and I listened, fascinated, everything she told me.
In the end, I asked the burner:
- Who said that?
And she, also to the burning linen:
-"The old ones"…
And with such a Reference, The Ancients, it can not be discussed, it is enough to see the example of the Magna Carta in England and its way of doing Justice.
The Ancients have a wise saying:
"Silence gives consent"!
And here I am, using the Wisdom of the Ancients, to convey Knowledge. I don't like to do that, but this information is important and I found such a document on a very patient day, beyond the eighth page of Google. On this site it gets more projection and can help more people, considering the fact that health professionals have knowledge here too. I confess, I suffer from peripheral neuropathy and only those who suffer from it know how much it hurts and I considered it unfair to keep it where it was: Literally speaking, in ostracism (…).
The aim of this study was to analyze the management structure for pain management in patients with AIDS at a referral hospital in Fortaleza, CE, Brazil. Descriptive research with qualitative focus, developed in 2010. Twenty interviews were conducted with health professionals (doctors and nurses), analyzed according to the framework of content analysis. The data were organized into categories: favorable and unfavorable structural conditions. There was a prevalence of unfavorable conditions in the interviewees' discourse, such as emphasis on pharmacological treatment, lack of specific pain care, lack of experienced pain management professionals, high demand and failures in the referral and counter-referral system. It is suggested to institute a new management model of care for patients with AIDS, emphasizing interdisciplinary pain care, training of professionals and improving medical records to use more effective assessment methods and procedures.
Acquired immunodeficiency syndrome
Nursing care Administration of patient care in Ceará, 2010. 1 Nurse. Doctoral student of the Graduate Program in Clinical Care in Nursing and Health, State University of Ceará. Scholarship of the Coordination of Improvement of Higher Education Personnel - CAPES. Fortaleza, CE, Brazil. email@example.com 2 Nurse. PhD in Nursing. Adjunct Professor of the Undergraduate Nursing Course at the State University of Ceará. Professor and Coordinator of the Graduate Program in Clinical Care in Nursing and Health of the State University of Ceará. Fortaleza, CE, Brazil. firstname.lastname@example.org 3 Nurse. PhD in Nursing. Post-Doctor in Social Psychology. Adjunct Professor of the Undergraduate Nursing Course and the Graduate Program in Clinical Care in Nursing and Health of the State University of Ceará. Coordinator of Teaching and Research of the São José Hospital of Infectious Diseases. Fortaleza, CE, Brazil. email@example.com 4 Nurse. Doctor. Free Teacher. Associate Professor at the Federal University of Rio de Janeiro. Rio de Janeiro, RJ, Brazil. Maparecidavas@yahoo.com.br
Rev Esc Enferm USP Received: 17 / 02 / 2012
2013; 47 (2): 456-63 Approved: 02 / 09 / 2012
In the current context of health in Brazil, pain has been one of the main reasons for care in emergency situations and in outpatient clinics of various medical specialties and other health professionals. In patients with acquired immunodeficiency syndrome (AIDS), it manifests as a common symptom, and can occur in all stages of the disease, presenting itself differently in each one of them. The more the disease progresses, the greater the incidence and intensity(1).
It is estimated that pain in individuals with acquired immunodeficiency virus (HIV) occurs up to 90% of cases(2). Specifically, pain occurs for three main reasons: HIV symptom; another opportunistic disease or infection; or side effect of antiretroviral treatment drugs (ART)(1).
The principles of pain management for health care professionals who care for people living with HIV / AIDS are disclosed. These include: describing the prevalence and types of pain syndromes found in patients with AIDS, analyzing the psychological and functional characteristics of pain, as well as barriers to appropriate pain management in this group and in others with HIV-related diseases. In addition, pain control should be emphasized in HIV-infected patients with a history of substance abuse, as well as the inclusion of oncologists as active participants in the care of patients with AIDS(3).
In addition, it is urgent to analyze the management of care implemented in institutions, in view of the importance of establishing increasingly individualized actions, with the participation of the interdisciplinary team in the conception of a multidimensional model of care for patients with pain.
To analyze the management of care, it is fundamental to know the structure of the institutions regarding the effectiveness of the processes related to the direct assistance to the patient and the resources applied, physical structure, availability of medicines, among others.
Over the past 30 years, clinical research has produced therapeutic improvements for HIV-infected patients, however, management and pain management problems in these patients have recently begun to be studied(1,4). Thus, this research aimed to analyze the managerial structure for the management of pain in people with AIDS in a hospital of reference in infectious diseases.
This is a relevant study about the management of pain in hospitalized patients with AIDS diagnosis, since it addresses the perspective of the health professional about the tools that exist in the institution where the patient works for the effective management of this symptom. It is believed that such an understanding is important for the planning of resolutive actions in this context.
This study was carried out in a hospital of reference in the treatment of infectious diseases in the State of Ceará. Its physical structure included hospitalization units, intensive care, hospital-day and specialized ambulatory services for people with HIV / AIDS, with professionals from the multidisciplinary team in daily care.
In the last 30 years, clinical research has produced therapeutic improvements for HIV-infected patients, however pain management and management problems in these patients, recently,
|began to be studied.|
The subjects of the study were health professionals, listed for convenience. Among the health professionals working in the institution, doctors and nurses were elected because they established the therapy to be instituted, and these patients performed care at 24 hours, assisting the patient in their biopsychosocial needs, intervening and making feasible the conduct of examinations and procedures for recovery.
As inclusion criteria, the following were considered: time of activity in the institution of at least one year; and care of AIDS patients in hospitalization, emergency, day-hospital or intensive care units. At the end, study counted on the participation of 20 professionals: eight physicians and 12 nurses, quantitative established by the theoretical saturation of the data collected in the interviews.
The semi-structured interview technique was used to collect data, consisting of identification data, professional training and related to pain management, considering the relevant points for care management: the existence of a formal or informal protocol for pain assessment ; description of pain management performed by the professional; patient care actions performed and considered specific to the care of pain; and listing of the difficulties and facilities for the treatment of pain in the institution. The interviews were recorded, allowing greater accuracy of the data, and performed in the work intervals of the professionals on the service day.
To analyze the data, we used the technique of content analysis(5), which covers a set of techniques of organization of communications and information, considered as a procedure against qualitative data to emerge topics or topics and concepts or knowledge. It consists of distinct and complementary phases: pre-analysis; preparation of the material; exploitation of the material; categorization; treatment of the results obtained; and interpretation.
The corpus of the study consisted of 20 interviews, having defined the sentence, grammatical unit, as Registration Unit (UR). On the other hand, the quantity of UR was distributed in thematic categories that emanated from the in-depth reading of the interviews, dealing with common characteristics related to the service structure considered to be favorable (Category 1) or unfavorable to the effective management of pain (Category 2).
To ensure the anonymity of the interviewees, doctors were coded with the letter 'M' and nurses with the 'E', followed by Arabic numerals, according to the order in which they were interviewed.
Regarding ethical issues, the research was approved by the Research Ethics Committee of the institution, according to protocol n ° 063 / 2009. The professionals signed the Free and Informed Consent Term that dealt with the objectives of the study, thus meeting the requirements of Resolution 196 / 96 of the Ministry of Health(6).
Table 1 presents the result of the thematic content analysis, in which two categories and six subcategories were apprehended, totaling 51 units of thematic analysis.
Table 1 - Distribution of thematic categories, subcategories and respective frequencies on management structure for pain management in people with AIDS - Fortaleza, CE, May / Sep. 2010
- Availability of human, material and organizational resources (CEFDRHMO)
|1. FAVORABLE STRUCTURAL CONDITIONS (CEF)|
|10 (19,6) 3 (5,9)|
- Reference Hospital (CEFHR)
38 (74,5) 2.1. No specific care for pain (CEDIAED)
- Lack of professionals with experience in pain clinics (CEDFPED)
- High Demand (CEDDE)
|2. UNFAVORABLE STRUCTURAL CONDITIONS (CED)|
|19 (37,2) 9 (17,7) 7 (13,7)|
- Failures in reference / counter-reference (CEDFRCR)
Note: N = 51
The aspects discussed by professionals about the management of pain care in patients with AIDS are described in the following categories.
Category 1: Favorable structural conditions
This category brought together 13 UR and addresses the professionals' perception about the conditions of the service considered favorable to pain management.
Availability of human, material and organizational resources
When asked about the facilities found for the adequate management of pain in the institution, professionals emphasized the frequent availability of medications, as verified in 10 UR.
The hospital really has all the medication! (E8).
We have no shortage of medicines, doctors are attentive, they leave everything prescribed! (E9).
The ease is that, from the moment the diagnosis is defined, then the medication is adequate too! (E1).
Interdisciplinary treatment on pain does not have, but medicines and professionals to prescribe and administer we have! (E12).
Other points were cited as relevant to characterize the structure of the service as adequate, which involved the organizational structure conducive to the conduct of examinations and to the monitoring of the patient's response to hospitalization and the treatment instituted. These aspects were addressed in the speeches of professionals:
Facilities (which we found) is hitting an x-ray, taking medication, referral to a specific service… (E2).
we have medications available, have the issue of hospitalization, you can pass medication to the hospitalized patient and monitor the response (M4).
The nurses 'discourses denoted the professionals' concern and willingness to provide comfort, safety and pain relief to patients, considered favorable conditions for the effective management of this symptom in the institution.
whenever he refers to pain, we are ready to interfere! (E7).
When he is not doing very well, he is in pain, we put him in the armchair, try to give him some comfort! (E4).
The investigated professionals also considered the structure of the adequate service for the pain management with respect to the fact that the institution is a reference in the treatment of HIV / AIDS.
everything is at our disposal, for being a hospital of reference! (E9.)
Being a reference service, we receive a lot of patient and care! (M1).
Ease is because here is a referral hospital… there are many medications, there are many employees, there are physiotherapists, we just don't have speech therapists! (M2).
2 Category: unfavorable structural conditions
The category on screen deserves to be highlighted in view of the number of gathered recording units, 38 UR. Half addressed the lack of specific care for pain in the institution, and the rest was divided into problems related to the lack of experienced professionals, the high demand for patients in the institution and, finally, failures in referral and counter-referral between health units which catered to the AIDS clientele.
No specific care for pain
In the search to better evaluate pain in the different health scenarios, protocols and measurement scales have been developed and implemented in services to help the professional in approaching this symptom. Regarding this aspect, 19 UR evidenced the professionals' concern regarding the non existence of a protocol of pain evaluation in the institution, despite being considered as a reference. The professionals considered the absence of this specific care difficult to promote targeted and individualized care to the patient with pain.
Because there is no protocol for conducting this pain, we do the basics: analgesia and the recommendations of motor physical therapy (M3).
Difficulties exist precisely because of the lack of protocol… (E6).
a systematic protocol would be ideal, but we still do not have it! (E10).
Lack of professionals with experience in pain clinic
The professionals surveyed reported failures in the processes related to the interdisciplinary management of pain, as observed in nine URs.
Sometimes we just get medicated and do not have that physiotherapy culture coming along (M3).
In some patients (with pain), there is no medication prescribed for pain (E6).
The professionals' experience was questioned when analyzing the following discourse:
Specific for pain management in relation to nursing care… there is nothing that I consider specific! (E4).
One of the professionals confirmed the existence of barriers to care for patients with chronic pain in the institution.
Health professionals do not like to attend patients who complain of chronic pain (MUMN).
In the professionals' discourses about the managerial difficulties encountered, seven URs highlighted the high demand of patients in the institution.
There is a great demand here in the hospital and we do not have enough time to give it to the patient! (M4).
we have very patient and have no way to focus on a specific treatment, just for pain! (M2).
When he arrives in pain and his assistant doctor is not there, we need to send him to the office, and we know he will wait in a line… (E4).
Failures in reference and counter-reference
In the speeches, three URs emphasized how professionals visualized the failures in referral and counterreference, which were experienced daily in the service.
When it's a headache, you want to refer to a neurologist and you do not have it right now! (M7).
You can not wait for this reference story! (E2).
suspecting the pain, I have to refer and will only know if the patient has improved or not on the return to the consultation, which will be four months from now… (M6).
The availability of medications, for the professionals investigated, is a favorable condition for the management of pain. Access to essential medicines and supplies for pain control is discussed as a cross-cutting factor in guaranteeing quality service, both from a managerial-budgetary and a technical-scientific point of view, which is consistent with several programs, actions and strategies of the Unified Health System (SUS)(7).DISCUSSION
However, the therapeutic intervention should not necessarily aim at the removal of the causal factors and the treatment of pain with functional pharmacological, physiological, anesthetic, psychiatric and neurosurgical measures. In particular, rehabilitation should be provided by trained and competent professionals, sufficient to clarify conditions and modify inappropriate beliefs(8).
In this context, there was a behavioral ability to manage care with a focus on pain management, showing that the participation of professionals and the presence of a common work project are indispensable conditions for truly integrated work in the sense of alleviating suffering of hospitalized patients. This requires unified, multidisciplinary activity, linked to the commitment, involvement and responsibility of each professional of the work team.
However, the belief that the institution, because it is a reference in the treatment of HIV / AIDS, had favorable conditions for attending to the various symptoms presented by patients, including pain. Reference institutions, most of the time, have professionals, materials, equipment and medicines, which usually leads to overcrowding and little effectiveness. However, the professionals interviewed mentioned that the hospital was able to meet the demand, justifying the prescription and the availability of drugs as facilitators of pain treatment.
The measures seemed insufficient to meet the clientele's needs in the face of symptoms, requiring new strategies to improve the quality of care and, in effect, the condition of life and patient health.
When addressing the unfavorable conditions for the management of pain, it was highlighted the inexistence of specific care for pain in the institution. The finding corroborates the results of a recent study carried out in a university hospital in Goiás, where it was evidenced the absence of routine for systematized assessment of pain in patients by the nursing team, considering the worrying result(9). The researchers inferred that the nurse works in direct contact with the patient, being easier to analyze the intensity of pain and the patient's response to the analgesic therapy instituted.
Another study carried out in a private hospital in Fortaleza, Ceará, showed that nurses had incipient knowledge about the systematization of care for the adequate management of pain, despite the constant disclosure of several instruments and procedures available for their evaluation(10).
Multidimensional instruments for pain measurement are applied in an outpatient setting, where more time is available and the patient who experiences chronic pain can be better known. For this clientele, scales are used to evaluate the multidimensions of pain, such as sensory, affective and evaluative, and there are those that include physiological, behavioral and contextual indicators, as well as self-registration by the patient(11). In the hospital environment, unidimensional instruments are applied to evaluate the pain experience, once they measure the intensity, one of the dimensions of the pain.
In spite of data widely published in the literature, few Brazilian institutions have implemented the routine of pain evaluation as the fifth vital sign, denoting the need for greater integration of the medical and nursing teams in order to raise awareness about the importance of the study of physiopathology and the treatment of pain, aiming at patient evolution and humanization of hospital treatment(9).
Interviewees' expectations were expressed regarding a specific protocol to facilitate the management of pain, although articulations were not proven in the direction of the implantation of this instrument.
In addition, it was emphasized the lack of professionals working in the institution with experience in pain management. It is known that the inadequate management of pain aggravates the health condition and affects the quality of life of the patient. In addition, in hospitalized patients, it can increase their permanence in the institution and generate constant readmissions, which negatively affects both the patient and the health service(12).
The adequate management of pain begins with a medical evaluation of the patient, which in turn involves adequate diagnosis that allows the development of optimal therapeutic strategies. Therefore, for evaluation and treatment to be performed effectively, it is necessary to institute interdisciplinary pain programs, with professionals trained to act in a team, in order to provide patients with pain, which, for the most part, resort to numerous resources of health care, without satisfactory improvement.
It was also evidenced that there was no medication prescribed for pain, which indicated the incipient knowledge and practice of physicians on the adequate management, as well as evidence of neglected care, since it is the right of the patient to evaluate and treat appropriate pain(13).
Another study discussed the problem of subprescription of analgesics, in which nurses referred to the physician's dependence on the appropriate prescription of this class of medications, reiterating the complexity of ineffective prescription as a consequence of underestimation of pain by the health team(14).
The result also corroborates study results that addressed the physicians' perception of the barriers to the adequate management of AIDS-related pain. The main difficulties reported were lack of knowledge about the management of pain among professionals, lack of availability to specialists in the subject and doubts about the use and potential addition of opioid analgesics in this clientele(15).
We also highlight the lack of knowledge of the nursing professional, as a direct responsibility for care, regarding the identification of nursing activities performed for pain management. In spite of this result, the nurse is currently the professional of the interdisciplinary team that maintains closer contact with the patient, being a pioneer in the studies and in the implantation of the pain evaluation programs in the different health scenarios(16).
It is also added that, through the training aimed at the biopsychosocial care of the human being, the nurse can evaluate, examine and implement non-pharmacological strategies of effectiveness to the relief of pain, guaranteeing the quality of life of the patient during hospitalization.
The unsatisfactory management of chronic pain in patients with AIDS was discussed in another study(17). She pointed out that, although less frequent than before the implementation of antiretroviral therapy, pain continues to receive unsatisfactory management for its relief, a significant problem that should also be considered in developed countries. In these, professionals do not always systematically evaluate patients' signs and symptoms, and unvalidated instruments are used for this purpose. This situation interferes with pain assessment and requires more research in search of better alternatives and instruments.
The data are even more alarming in underdeveloped countries, where practitioners are unaware of their role in the proper management of pain, neglecting care and generating serious repercussions on the care process, making it fragmented, untied and dehumanized.
These questions were explored by scholars who reported that nurses reported that pain was underestimated by professionals directly attached to patient care, demonstrating that assessment and relief of pain were perceived as secondary factors and that other symptoms were prioritized to the detriment of pain(14).
The proper treatment of pain has relevance for the well-being of human beings, and it is legitimate to recognize and promote the treatment of pain as a category of one of the fundamental rights of man. Such recognition will serve as a basis for the legal structure to be incorporated into law in the laws of the various countries and will be mandatory in regional and international treaties(18).
Therefore, it is necessary to combine educational programs with governmental or service management determinations, requiring professionals to practice adequate pain control and relief(13).
Therefore, it is necessary to implement protocols of conduct at the levels of care, which allow the improvement of care, regulation, evaluation and control, as well as the training and ongoing education of health teams, based on a focus strategic, humanized, involving professionals of superior and technical level, according to the guidelines of the Unified Health System(10).
High demand is also accentuated as one of the main points attributed to ineffective pain management in the institution. The emphasis given to the large number of visits goes against the reality of many health institutions, where they reproduce some form of dealing with work that privileges the production of procedures and activities to the detriment of results and effects for the subjects who are under responsibility. Often, they offer services totally incongruent with the demand and believe that their object of work is the disease or the procedure, assigning less importance to the existence of the subjects in their complexity and suffering(19).
Under SUS, one can attribute causes to the existence of this high demand and the challenge to attend it. One of them is the difficulty of planning and discussing the dynamics of work in some services; other causes would be the commitment of the flow and counterflow of the users and information between the different levels of attention of the health system; different management styles of the teams, configuring relations that are now approximate, sometimes conflicting; conflicting expectations and conflicts between health teams and local authorities, and the relationship between the health service and the population when the teams are unable to meet the demand(20).
It is essential, therefore, to value the opening for the encounter between the health professional, the user and his social network, as a fundamental link in the process of health production; reorganize the service, based on the problematization of the work processes, so as to enable the intervention of the multiprofessional team in charge of listening and solving the user problem; elaborate individual and collective therapeutic projects with teams of reference in daily attention that are responsible and managers of these projects; and promote structural changes in the form of service management, expanding the democratic spaces of discussion and decision, listening, exchanges and collective decisions(19).
Actions of this type should be developed by the subjects involved in the process of assisting, from managers and health professionals to the patient, family and community. In this way, one can glimpse individualized care, based on the integrality of health care.
The discussion about demand generates other reflections, mainly regarding the integrality of health actions, which was deepened in the subcategory that dealt with reference and counter-reference. The reports pointed to failures in referral and counter-referral between specialists and services that cater to clients affected by HIV / AIDS.
Health care in SUS is organized in increasing degrees of complexity, with the population flowing in an organized way between the primary, secondary and tertiary levels, through formal referral and counter-referral mechanisms.
In practice, it represents a prescriptive stance, attached to formal rationality, which does not consider the real needs and flows of people in the health system and, therefore, ends up not materializing. The services work with very different logics, the articulation between them does not happen, it does not ensure the resolution of the problems and the population ends up entering the system through all the ports(21). Ideally, the user should enter the first level of care of the health system and, afterwards, it will be reported to the others as needed.
The reality presented in the professionals' discourses, which involves the treatment and follow-up of patients with pain, was considerably impaired by the fragility of the reference and counter-referral system, understanding that, in these cases, the problem is aggravated by the urgent need for pain improvement in the patient as the main complaint.
Despite the progress mainly related to treatment with antiretrovirals, many challenges still persist in the area of prevention and care(22). These individuals continue to coexist and face numerous consequences arising from seropositivity, related to stigma and prejudice, impacting social, family, affective and sexual relationships.
Investments should be made in the training of professionals, in the process of restoring the client's health, in improving living conditions, in the guidelines for self-care, in the simplification and safety of procedures, as well as in the result of the hospital product, measured by means of quality of documentation and registration of nursing actions.
An important change would be to develop effective managerial practices integrated among institutions that can serve people with HIV / AIDS and pain, making the referral system work, counterre- ference is efficient, and services have adequate communication to provide continuity to follow up this patient in the institution of origin.
The management structure of a specialized pain management service in hospitalized AIDS patients was clearly identified. In this context, the structure of the hospital could be duly analyzed on favorable and unfavorable points. Initially, the availability of material, human and organizational resources was favorable, as well as the fact that the institution was a reference, which indicated the existence of a team capable of attending to the abundant complaints raised by patients in daily attendance.
The main factors that impeded the adequate management of pain in the institution were the large number of patients, the lack of specific care or protocols to manage decisions related to pain, and frequent interinstitutional failures as regards reference and counter-referral.
It was possible to perceive that, despite being considered a reference institution, it showed fragile care, in which professionals could even visualize the facilities and difficulties found in daily life to attend the pain symptomatology. However, they performed informal care based on individual perceptions, not using models recommended for the area of pain care, such as the use of scales or instruments intended for the most accurate evaluation.
It was verified the need to rethink the current management of pain in the institution, which implies a restructuring of the model of management of hospitalized patient care, improvement of the organizational, material and human resources acting, enabling them to evaluate pain as routine, besides developing a culture of accurate analysis and records of this symptom, so that therapeutics are better implemented and guarantee analgesic satisfaction to the patient.
Roberta Meneses Oliveira1,
Lucilane Maria Sales da Silva2,
Maria Lúcia Duarte Pereira3,
Maria Aparecida Vasconcelos Moura4
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