Protective Isolation for Patients with Haematological Malignancies: A Pilot Study Investigating Patients' Distress and Use of Time.

Background: Patients with haematological malignancies are often hospitalized in protective isolation until full neutrophil recovery in order to prevent infections. This descriptive pilot study evaluate the level of isolation-related distress and the use of free time in a sample of Italian onco-haematological patients who were hospitalized in protective isolation. Materials and Methods: Participants were 18 patients hospitalized in hematologic ward to receive induction therapy (n=12) or autologous stem cell transplant (n=6). They completed a self-report questionnaire before discharge. Results: Participants reported a moderate level of isolation-related distress, anxiety, and boredom: the more the anxiety and the boredom, the more the distress (r=.77; P<.001), (r=.79; P<.001), respectively. The activities performed during isolation were: watching TV (72.2%), reading (55.6%), thinking (33.3%), surfing in Internet or using PC (33.3%), and playing games or making cross-words (16.7%). Participants who reported pessimistic thinking had higher isolation-related distress (P=.004) as well as anxiety (P<.001) and boredom (P=.001). Conclusion: Haematology Units should support isolated patients in spending their time in recreational activities, allowing more contacts with immediate relatives and friends, providing free TV and Wi-Fi connection inside the room. In addition, patients should have to keep themselves physically active. Isolation-related distress could also be reduced by providing psychological support.

[Family caregiver education: an Italian experience]. / L'educazione dei family caregiver: un'esperienza italiana.

The role of family caregivers is essential for optimal treatment of patients with chronic diseases since it ensures the compliance to treatment, continuity of care, emotional and social support. Despite the significant value of informal caregiving, the relatives report not to have the necessary knowledge and skills to provide ongoing support to the family member with chronic disease and, therefore, show the need to be educated in their role as caregivers. The reliance on family caregivers unprepared for the daily management of the illness patients may threaten the patients' quality of life and, moreover, contributes to increase the burden of care of the caregiver by exposing it to the risk of psychosocial distress. The Nursing Department of Campus Bio-Medico of Rome have addressed such a need promoting training courses on family caregivers since 2011 with the goal of supporting families in the acquisition of specific skills related to health care of patients with chronic conditions. The UCBM educational program has been developed in order to convey knowledge tools especially for: the role and challenges of the caregiver, the supply of health services to support patients and the family member. The UCBM educational program has been structured in lessons to analyze the deepening of chronic diseases related to different areas of medical interventions and in practical sessions guided by a nurse specialist in order to support the family in the acquisition of skills and competencies for the care management of patients at home. The positive feedback, received from users who have attended the two past editions of the UCBM educational program, demonstrates the importance of acquiring technical knowledge and practical tools that are essential to independently manage all aspects of patient care. It's important to notice, moreover, that learning these skills will support the family in the patient management, both in short and long term, and that is very relevant considering the temporal characteristics of the chronic disease.

The education of family caregivers as an ethical issue.

Family caregiving represents the first and predominant source of care for 75% to 80% of people with chronic illness in industrialized countries. They have a fundamental role in assisting, providing care, and support to their relatives throughout all the history of the illness. Despite the significant value of informal caregiving, studies consistently report unmet needs among informal caregivers, particularly with regard to obtaining the information and education necessary to care for an older adult experiencing a chronic health condition. Health care professionals talk to patients and their relatives about their disease and about how to manage them daily, forgetting to consider the healthy component that still accompanies their disease though to differing degrees. In the twentieth century some philosophers highlighted that health is still very frequently a hidden asset, an asset that human beings forget not only to possess, but mostly to guard. This paper argues that the family can be an entity responsible not only for the treatment and care of a sick person, but also to building the health of this and the other members Family caregivers can build families capable of "building health" even when caring for a chronically ill. Therefore the education of family caregivers is an important ethical issue. Health care providers should be supportive of family caregivers and help them acquire knowledge and skills in order to maximize quality care. In addition, it is very important that family caregivers: 1. acquire the ability to direct the family's attitude to the enhancement of the health of a sick person, 2. lead the family and not just the sick person to have an adequate and proper life style in order to manage both his/her pathology and his/her health; 3. contribute to improve the quality of life both of the patient and of the family considered as a "unit of care"

Hospital communication between perception and cost savings: an Italian case study.

BACKGROUND: Communication field is very much studied by Companies but not so much from the Italian NHS. We aim to study the suffering communication that patients, relatives and customers feel when they approach a hospital. The research was carried out in an Italian region: Lazio. The Objective was to take a picture of the current state of Regional Health-Care System (RHS) communication by local Visual Communication (VC), telematic, internal perception, communication propensity and perception of hospital's brand. MATERIALS AND METHODS: We have sampled 7 hospitals (114 items): Web-site's analysis, Location's VC, Urp's manager interview, Focus-group, Analysis Valuator of the Hospital's Brand (AVoHB). RESULTS: WEB: 14% of web-sites had a positive score, 86% had an Hospital Service Guide, 43% hadn't Urp's e-mail, 29% had a ward's map, 0% was W3C. Average: -17pt. on ±74pt. VISUAL COMMUNICATION: 100% had a Help-desk at the entrance, 100% had readable signpost, 43% had a readable badge, 29% had chromatic signpost, 0% had an assistance signpost and none of them had the Toilettes signpost. Average: -10,42pt. on ±58pt. FOCUS-GROUP: Staff underline their very high interest in interpersonal communication. They report a lack of VC inside their hospitals that cannot help patients to be self-oriented. Lost users can only ask information to the first doctor they see, taking staff time, which is already lacked. AVOHB: Powergrid shows that the positioning of the Aggregated Brand (RHS) and of each hospital analyzed are in the III quadrant. CONCLUSIONS: By a Corporate Communication point of view we can see that almost all companies reach a good level in terms of effective communication but none of them excel in all critical areas for an effective communication.

Is non-directive communication in genetic counseling possible?

In 2007, over 560,000 genetic tests were performed in Italy. However, only 70,154 genetic counseling sessions were conducted. Some say that non-directive counseling is necessary so that the patient understands the test results and the different options available and that the physician should not influence the patient's free choice. We need to clarify the meaning of non-directive consultation and if it is in fact possible. Each doctor has his own values and, in order to achieve the intended purpose, he will give information that, with his verbal, para-verbal and body language will guide the patient to one decision or another. Taking into account the axiom of effective communication "You can't NOT communicate", non-directive counseling is very difficult or even impossible. In genetic counseling, the knowledge that the patient receives of the correct diagnosis and related medical facts and of the applicable genetic considerations is basic to the entire process. Nonetheless, such knowledge in itself is not sufficient if it cannot be appropriately imparted to the interested person or persons. We think "persuasion" is not the right method, but instead "convince" meaning "co-win", "win together" may be the best approach to a problem of such great importance. The counselor will have achieved the desired goal with his patient if he is able to channel the emotion towards a mutually beneficial objective. The primary goal is not to persuade but to win-together (convince) with the patient and the unborn child.

A brief history of the Quality of Life: its use in medicine and in philosophy.

The term Quality of Life (QoL) has been increasingly used in medical and philosophical literatures for the past four decades. The purpose of this article is to analyze how QoL is being used in medicine and in philosophy to understand its current status. In the 1960s and 1970s new technologies raised new questions for clinicians, so they used QoL as a parameter for making decisions in health issues. Consequently, researchers focused their interest on the construction and testing of instruments designed to measure health and QoL. However, all these instruments showed some conceptual and methodological problems that made the use of QoL in medicine difficult. While some researchers considered QoL an "idiosyncratic mystery", others believed that QoL was useful in implementing the patient's point of view into clinical practice and they suggested improving QoL's definition and methodology. In the 1980s, some consequentialist philosophers used QoL to formulate moral judgment, in particular they justified infanticide for some severely handicapped infants, and both euthanasia and suspension of life-sustaining treatment using QoL. In the 1990s, welfarist philosophers opened a new debate about QoL and they associated it with health and happiness. These philosophers developed QoL and those other concepts as subjectivist notions; consequently their definition and their measurements pose challenges. Afterwards researchers' interest in theoretical issues regarding QoL has fallen; nevertheless, physicians have continued to use QoL in clinical practice.

TACT glossary: technoscience.

The term technoscience (T) indicates the complex interactions between contemporary science and technology, that have become practically inseparable. From an epistemological point of view, T only considers the quantitative knowledge in a reductionist way. Nature has been reduced to a machine that works according to laws learnt through the experimental science. At present, technical efficiency represents an operational dominion on Nature; it gives the power to those who possess it. Scientists, considered as visionaries, have the assignment to lead society. They create new cosmos-visions that are technocentric, thus Ts use the human being as subject of experimentation and they transform some essential dimensions of the human being. All this suggests the necessity of an ethical evaluation of the action integration of different subjects in what we call integrated action. This configuration involves ethical obligations for the agent: he/she has to act preserving and allowing the collaboration, and respecting the professional's individual responsibility.

Informed consent.

Informed consent (IC) in clinical experimentation is a process by which a subject voluntarily and freely confirms his/her willingness to participate in a trial, after having been informed of all involved aspects. IC is a concept enough recent within medical tradition. Unquestionably, Nuremberg trials (1945-1947) influenced thought about consent in Medicine. When the idea of IC evolved, discussion for appropriate guidelines moved increasingly from a narrow focus on the physician's/researcher's obligation. IC shall be obtained in writing and documented before a subject is enrolled into clinical investigation. , Particularly in the case of medical devices, it is necessary an adequate information to the patient on possible incidents occurring following placing of devices.

Observational protocol.

An observational study (OS) is a non-interventional/non-experimental survey. In the OSs, the investigator observes and evaluates results of ongoing medical care without 'controlling' the therapy beyond normal medical practice. An OS is aimed: 1. to the evaluation of the safety profile of any medical procedure (drug, device, surgical procedure, radiotherapy, diagnostics, etc.) under the normal conditions of use and on great numbers of patients, 2. for close examinations on the effectiveness in the clinical practice, 3. for the verification of the prescriptive appropriateness and 4. for pharmacoeconomic evaluations. For their characteristics OPs don't involve additional risks for the patients to which the best conditions of clinical assistance are offered. Consequently they do not need further or different ethical procedures/ requirements in comparison to the experimental clinical studies Particularly it is necessary to avoid that an interventional trial could be introduced as an OP.

Ethics committees.

Ethics committees (ECs) are a relevant body for dealing with ethical issues in healthcare. They born in order to resolve dilemmatic situations. Contemporary ECs are independent standing committees with multidisciplinary representation, including medicine, nursing, social work, law, pastoral care, healthcare administration, and other different expertises. The functions of ECs are various: estimating clinical trials; analyzing ethically relevant clinical cases; drafting hospital/organizational guidelines, and to carry out education activity. The composition and kind of skills requested in an EC could change according to national laws. About international ethical standards in clinical experimentation, the World Medical Association's Declaration of Helsinki is the reference according to which examining clinical trials by ECs.

[From a case of plagiarism to rethinking the use of impact factor]. / Da un caso di plagio al ripensare l'uso dell'impact factor.

UNLABELLED: In Italy the impact factor (IF) is used to evaluate individual or collective scientific research (Universities, Departments and Research groups); such Universities' evaluation is also used to assign funds by Government. The IF is an indicator of a journal's prestige. It varies a lot according to: 1. type of discipline and thematic area which the journal cover; 2. authors' number; 3. weight given to citations: 4. self-citations. On these data it seems to us that IF, normalized also, is little profit to evaluate scientific quality of a work and/or researchers' activity. Additionally, such use of the IF: 1. has made it difficult to use the same Science Citation Index, since unjustified citations and self-citations are augmented; 2. can compromise the research and increase the cases of scientific misconduct, since researchers are inclined to publish also in absence of meaningful scientific results, only to augment own IF. Quality of a research depends on intrinsic factors (i.e. originality, methodology, etc.), that are perceivable only by experts (peer-reviewers), and it doesn't depend on external factors as the place of publication or the citation success. CONCLUSIONS: scientific literature has to reacquire its role: to introduce best evidence for scientific research avoiding contaminations caused by economic affairs and competition consequent IF. To such end the evaluation from peer-reviewers is a more reliable way, even though not perfect.

Capacity development through reflective practice and collaborative research among clinic supervisors in rural South Africa--a case study.

UNLABELLED: This article provides an example of one form of action research, collaborative enquiry, in the health sector. It argues that collaborative inquiry is a powerful tool to develop reflective capacity among health workers and can facilitate the ownership of learning and the production of usable knowledge. It reports the results of a research project investigating the roles and functions of clinic supervisors in three districts in the Eastern Cape Province, South Africa. BACKGROUND: Clinics are the cornerstone of the new district-based health system. They are staffed primarily by nurses and are often the only contact point for large parts of the rural population. In conditions of remoteness and isolation, clinic staff depend upon personal interaction with clinic supervisors to enable them to function productively. Yet experience has shown that supervisors do not always fulfil this role. This project aimed at gaining insight into the status of clinic supervision, understanding the factors that hinder effective supervision and making recommendations for improvements. METHODOLOGY: Using a participative approach of Collaborative Inquiry, a team of 10 clinic supervisors and the research co-ordinator collected data reflecting on their own practice over a period of 5 months. These data were then jointly analysed and written up. CONCLUSIONS: The participating clinic supervisors went through several periods of uncertainty, when many of them asked themselves why they agreed to this project. However, the engagement with stakeholders and colleagues and the joint analysis of research data soon proved to be a valuable source of insight. There was unanimity in the end that the research process had been very valuable and enabling.