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1.
Sociol Health Illn ; 46(1): 78-94, 2024 Jan.
Article En | MEDLINE | ID: mdl-37394774

During the last few decades, the human rights paradigm has shifted the normative status of disabled people, providing, in principle, the right to full and equal participation. Particularly in neoliberal economies, however, participation in work life is a major constraint on social legitimacy, creating a predicament for people who cannot adhere to the ideal of the 'productive member of society'. In this article, I explore this predicament at the intersection of disability studies and the sociology of health and illness, reviewing literature and discussing key concepts. I argue that in neoliberal societies, two distinct and largely incompatible pathways to social legitimacy depend, respectively, on (a) a version of the classical sick role and (b) a more recently constituted able-disabled role. Of these, the first pathway has mainly been explored and critiqued in the sociology of health and illness, while the second features mainly in disability studies. However, both pathways can be understood (1) as ableist mechanisms for maintaining adherence to values of productivity and by (2) imposing on disabled people an unequal burden of invisible work-a key feature of ableism, driving inequality both within the group of disabled people and for the group as a whole.


Disabled Persons , Sick Role , Humans , Human Rights
2.
Curr Top Behav Neurosci ; 61: 1-14, 2023.
Article En | MEDLINE | ID: mdl-35505054

Sickness behavior was conceptualized initially as the behavioral counterpart of the fever response to infectious pathogens. It helps to raise body temperature to its higher setpoint and to maintain it at this new level and it has the additional benefit of enabling a weakened organism to protect itself from other dangers. The discovery of the behavioral effects of proinflammatory cytokines produced by activated immune cells provided a cellular and molecular basis to this phenomenon. The administration of cytokines or cytokine inducers like lipopolysaccharide to healthy rodents allowed to reveal the similarities and differences between inflammation-induced sickness behavior and the fever response. It also led to the understanding of how the inflammatory response that is triggered at the periphery can propagate into the brain and induce the behavioral manifestations of sickness. At the behavioral level, the demonstration that sickness behavior is the expression of a motivational state that reorganizes perception and action in face of a microbial pathogen just like fear in face of a predator appeared at first glance to strengthen the adaptive value of this behavior. However, all aspects of sickness behavior are not always favorable for the organism. This is the case for anorexia that is beneficial in the context of bacterial infection but detrimental in the context of viral infection. In addition, studies of sickness behavior in natural conditions revealed that like any other defensive behavior, sickness behavior requires trade-offs between its survival benefits for the sick individual and the costs incurred especially in the context of gregarious groups. Thanks to these studies, evidence is emerging that sickness behavior is much more variable in its expression than initially thought, and that part of this variability depends not only on the pathogen and the social context in which the infection develops but also on individual factors including species, sex, age, nutrition, and physiological status.


Cytokines , Illness Behavior , Animals , Brain/physiology , Sick Role , Inflammation , Behavior, Animal/physiology
3.
Metas enferm ; 25(2): 65-72, Mar 2022. graf, tab
Article Es | IBECS | ID: ibc-206363

Se presenta un nuevo constructo teórico en el campo de la Salud Mental para combinar el Proceso de Atención de Enfermería con los diagnósticos enfermeros, partiendo del rol que adopta la persona en función de su enfermedad mental. En este contexto surge la Teoría basada en roles en Salud Mental, que consta de tres partes: la identificación de roles, la actuación enfermera y la intervención por fases. Esta nueva teorización se encuentra influenciada por los modelos de Dorothea Orem, Callista Roy y Joyce Travelbee, así como por las teorías de Patnerson y Zderad, Bertalanffy, Leininger y Peplau. Con la creación de esta nueva teoría se pretende ofrecer al profesional de Enfermería un soporte teórico que le permita desarrollar planes de cuidados en función del rol que desempeña el paciente. Con ello se busca favorecer un cuidado integral a la persona con sufrimiento psíquico e impulsar el cambio hacia la recuperación. El objetivo es dar a conocer la teoría propuesta como una herramienta de trabajo para la elaboración de los planes de cuidados e invitar a la reflexión a los profesionales de Enfermería que trabajan en el campo de la Salud Mental, ya que se considera que este nuevo constructo puede resultar útil y aplicable en la práctica clínica e impulsar nuevas áreas de investigación.(AU)


A new theoretical construct is presented in the Mental Health area, in order to combine the Nursing Care Process with nursing diagnoses, based on the role taken by the person according to their mental health. The Role-based Theory in Mental Health appeared in this setting; it consists of three parts: role identification, nursing action, and intervention by stages. This new theorisation was influenced by the models by Dorothea Orem, Callista Roy and Joyce Travelbee, as well as by the theories by Patnerson and Zderad, Bertalanffy, Leininger and Peplau. The creation of this new theory intends to offer a theoretical support to Nursing professionals, allowing them to develop plans of care according to the role played by the patient. The intention is to encourage comprehensive care for the person with psychological suffering, and to drive a change towards recovery. The objective is to present this theory as a work tool for the preparation of plans of care, and to invite Nursing professionals working in the Mental Health area to reflection, because it is considered that this new construct can be useful and applicable in clinical practice, and become a driver for new areas of research.(AU)


Mental Health , Nursing Care , Role , Nurse's Role , Sick Role , Nursing Theory , Standardized Nursing Terminology
4.
Medellín; s.n; 2022.
Thesis Es | LILACS, BDENF, COLNAL | ID: biblio-1443569

Objetivo: comprender el rol de los hombres en enfermería, teniendo en cuenta su reconocimiento y las emociones que subyacen en el ejercicio de su práctica profesional. Metodología: esta tesis fue realizada desde la metodología de estudio de casos colectivo propuesta por Robert E. Stake. Se entrevistaron 12 enfermeros con desempeño en diferentes escenarios laborales empleando entrevistas en profundidad, notas de campo y memorando analíticos para registrar las experiencias emotivas de los participantes. El análisis se realizó por medio de agrupamiento y reducción de los fragmentos de las entrevistas y la construcción de un mapa conceptual. Resultados: los roles de género son producto de una construcción social, y en este sentido, se moldean y cambian con el devenir histórico y cultural, prueba de esto es el ingreso de los hombres a la enfermería. Sin embargo, a nivel social persiste una naturalización de la enfermería como un oficio femenino que se traduce en una imagen estereotipada del papel de los enfermeros que dificulta su reconocimiento. Conclusiones: los hombres desde el momento en que manifiestan su intención de convertirse en enfermeros, inician un proceso de adaptación en diferentes esferas, donde no solo deben negociar sus emociones, sino emprender una lucha permanente por el reconocimiento como un motor para el desarrollo y el cambio en diferentes aspectos de su vida. (Tomado del repositorio institucional)


Objective: to understand the role of men in nursing, taking into account their recognition and the emotions that underlie their professional practice. Methodology: This thesis was conducted using the collective case study methodology proposed by Robert E. Stake. Twelve nurses with performance in different work scenarios were interviewed using in-depth interviews, field notes, and analytical memorandum to record the emotional experiences of the participants. The analysis was carried out by grouping and reducing the fragments of the interviews and constructing a conceptual map. Results: gender roles are the product of a social construction, and in this sense, they are molded and change with historical and cultural evolution, proof of which is the entry of men into nursing. However, at the social level, a naturalization of nursing as a female profession persists, which translates into a stereotyped image of the role of female patients that hinders its recognition. Conclusions: men, from the moment they express their intention to become nurses, begin a process of adaptation in different areas, where they must, in addition to negotiating their emotions, constantly fight for recognition as the engine of change and development in different aspects of their lives. (Tomado del repositorio institucional)


Humans , Male , Sick Role , Professional Practice , Health Knowledge, Attitudes, Practice , Nurses, Male
5.
Omega (Westport) ; 83(3): 470-486, 2021 Aug.
Article En | MEDLINE | ID: mdl-31213151

The concept of roles has been crucial to the theoretical understanding of the construction of the dying process and the subjective experience of dying. Talcott Parsons first outlined the sick role in 1951. Beginning in the early 1960s, the academic literature recognized that those with chronic illness do not fit the criteria for the sick role as Parsons defined it. Since the introduction of hospice and palliative care, a new intermediate role has been constructed by the medical system. This role has been designated the chronic sick role. Formally defining the intermediate role between the sick and dying roles will help alleviate the issue of role confusion and serves to define what is now a gray and liminal phase between sickness and dying.


Hospice Care , Sick Role , Humans , Palliative Care
6.
Qual Health Res ; 31(2): 298-308, 2021 01.
Article En | MEDLINE | ID: mdl-33176575

Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention, and analyzed via "constant comparison." The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the "sick role," with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of "normality."


Fatigue Syndrome, Chronic , Chronic Disease , Fatigue Syndrome, Chronic/therapy , Humans , Narration , Qualitative Research , Sick Role
7.
Chía; s.n; 2021. 98 p. tab.
Thesis Es | LILACS, BDENF, COLNAL | ID: biblio-1359155

A través de una Metasíntesis guiados por el método propuesto por Sandelowsky y Barroso, se pretende profundizar en el concepto de patrón de M. Rogers y M. Newman, evidenciando, los atributos y cualidades en el uso de este concepto, que permiten el estudio del ser desde perspectivas diferentes a las convencionales para la disciplina de la enfermería. De igual manera, se identifica la necesidad de realizar un estudio dirigido a las personas que se enfrentan a situaciones difíciles a través de una articulación con la intervención de enfermería. Una intervención diferente y novedosa donde no se realiza la observación del ser desde aspectos físicos, sino por el contrario, se compone de estructuras que corresponden al transcurso de la vida de las personas. Así mismo, el acompañamiento de la enfermera en este proceso se vio reflejado en el bienestar de las personas y el reconocimiento del significado de su vida mediante la identificación del patrón; realizar cambios en rutinas que permitan el crecimiento personal o la expansión de la conciencia beneficiarán a la enfermera y a la persona.


Humans , Male , Female , Patient Comfort , Nursing Care , Sick Role , Health
8.
Int Marit Health ; 71(3): 160-165, 2020.
Article En | MEDLINE | ID: mdl-33001426

BACKGROUND: Seasickness (SS) is an often hidden pathology, but one that can significantly disrupt work on board. The aim of the study is to evaluate the influence of SS on the workability of workers on board vessels. MATERIALS AND METHODS: We performed a cross-sectional questionnaire study conducted on 250 oceanographers in 2015 during 3 months. Based on the "Bos seasickness susceptibility questionnaire", we created a specific questionnaire with 49 questions. RESULTS: 151 men and 72 women responded to the survey. 188 of them (91.7% of women and 80.8% of men) report being seasick, either occasionally (69%) or at each boarding where there is female predominance (23.6% vs. 11.3% for men). The major symptoms are nausea (82%) and vomiting (56%). 60% of the workers think that SS has an influence on the success of their mission, by first affecting their mood (50%), relationship (23%), and increased risk of accidents such as falls, accidents on machines or in laboratories (40%). Antinaupathic treatments also produce deleterious effects on their workstation. Women have higher risk of developing SS (odds ratio [OR] 2.6; 95% confidence interval [CI] 1.03-6.6; p = 0.04), more frequently taking medicines when ill (OR 4.1; 95% CI 1.27-13.2; p = 0.004) and coming with her own tablets (OR 2.3; 95% CI 1.3-4.1; p = 0.04). CONCLUSIONS: Gender is a trending factor of SS. Information on SS clinical signs, impact and therapeutics could be prone to prevent sickness and impact of it on workability.


Military Personnel/statistics & numerical data , Motion Sickness/psychology , Oceanography , Research Personnel/statistics & numerical data , Adult , Cross-Sectional Studies , Female , Humans , Male , Sick Role
9.
Int J Rehabil Res ; 43(4): 347-354, 2020 Dec.
Article En | MEDLINE | ID: mdl-32909989

Two factors related to the continuation of persistent pain are pain catastrophizing and illness perceptions. Pain neuroscience education is known to positively influence both in patients with persistent pain. As the integration of pain neuroscience education in monodisciplinary physiotherapy treatments is effective, integration in transdisciplinary cognitive-behavioral treatments seems recommendable. When doing so, the moderating effect of pain catastrophizing and perceptions on treatment results have to be examined, as these provide valuable information under which conditions treatment works. A bottom-up retrospective observational study evaluated the changes in clinical outcomes, and relationships between clinical outcomes and cognitive and emotional factors in patients with persistent pain. Multiple regression analysis, PROCESS macro, explored the moderating effects of pain catastrophizing on the relationship between illness perceptions and self-reported symptoms of central sensitization. In total, 78 patients were included in the study. A correlation between pretreatment scores and change scores in illness perceptions and self-reported symptoms of central sensitization following treatment were found (resp. R-sq 0.407, F(10,99) = 0.638, P = 0.000; R-sq 0.361, F(5, 54) = 0.609, P = 0.000; and R-sq 0.314, F(4,55) = 0.560, P = 0.00), however, moderation of pain catastrophizing scores on these correlations was not found. Even though an association between changes in pain catastrophizing and illness perceptions in patients with persistent pain was found, the direction or strength between the changes in illness perceptions and changes in self-reported symptoms of central sensitization was not influenced by pretreatment scores of pain catastrophizing.


Catastrophization/therapy , Central Nervous System Sensitization , Chronic Pain/psychology , Cognitive Behavioral Therapy , Sick Role , Catastrophization/psychology , Female , Humans , Male , Middle Aged , Pain Measurement , Retrospective Studies , Self Report , Sickness Impact Profile
10.
Perspect Psychol Sci ; 15(3): 643-664, 2020 05.
Article En | MEDLINE | ID: mdl-32097096

The United States suffers high rates of preventable lifestyle disease despite widespread calls for people to take responsibility for their health. The United States also stands out in its rejection of government action to guide industry practices and consumer choices. Why? We examine how deeply rooted cultural narratives about "free choice" and "personal responsibility" infuse policymaking, advertising, media, social norms, and individual attitudes about health in the United States. We argue that these narratives contribute to ill health in the United States: They encourage stress and worry over health, blame and stigmatization of the unhealthy, widened health disparities, and the failure to adopt policies that could save lives. Psychologists can play a major role in expanding narratives about health so that they include the role of personal choice and responsibility but also reflect current science about the physical, social, and cultural drivers of health. These broader narratives can be used to promote a more comprehensive understanding of health and to better inform the design, communication, and implementation of effective health-supportive policies.


Attitude to Health , Choice Behavior , Sick Role , Social Responsibility , Social Values , Communication , Cross-Cultural Comparison , Health Policy , Health Status Disparities , Humans , Motivation , Personal Autonomy , Socioeconomic Factors , United States
11.
Theor Med Bioeth ; 41(5-6): 203-221, 2020 12.
Article En | MEDLINE | ID: mdl-33594601

Philosophers of medicine have formulated different accounts of the concept of disease. Which concept of disease one assumes has implications for what conditions count as diseases and, by extension, who may be regarded as having a disease (disease judgements) and for who may be accorded the social privileges and personal responsibilities associated with being sick (sickness judgements). In this article, we consider an ideal diagnostic test for coronavirus disease 2019 (COVID-19) infection with respect to four groups of people-positive and asymptomatic; positive and symptomatic; negative; and untested-and show how different concepts of disease impact on the disease and sickness judgements for these groups. The suggestion is that sickness judgements and social measures akin to those experienced during the current COVID-19 outbreak presuppose a concept of disease containing social (risk of) harm as a component. We indicate the problems that arise when adopting this kind of disease concept beyond a state of emergency.


COVID-19 Testing , COVID-19 , Disease , Philosophy, Medical , Asymptomatic Infections , COVID-19/diagnosis , Humans , Sick Role
12.
Qual Health Res ; 30(2): 268-278, 2020 01.
Article En | MEDLINE | ID: mdl-31585513

The impact of antidepressants on selfhood is well recognized but little is known about what this means for young women who take antidepressants during a key period for identity development. We analyzed interviews with 16 young women to explore the way that antidepressant use might shape selfhood. Thematic analysis was used to identify a range of potential self-related themes in the participants' narratives including a "diagnosed self," "an ill self," "a normal self," "a stigmatized self," "an uncertain self," and a "powerless self." Themes highlighted the complex influence of antidepressants on young women's selfhood. Antidepressants not only offered legitimacy for distress and the opportunity to have a more "normal" self but also left the young women challenged by some of the negative associations with antidepressant use and uncertainty about their identity. Prescribers should be mindful of the impact of antidepressants on young women's developing selfhood.


Antidepressive Agents/therapeutic use , Self Concept , Sick Role , Stress, Psychological/drug therapy , Stress, Psychological/psychology , Adolescent , Adult , Female , Humans , Interviews as Topic , New Zealand , Social Stigma , Women's Health , Young Adult
13.
Soc Sci Med ; 237: 112447, 2019 09.
Article En | MEDLINE | ID: mdl-31376531

This article extends deservingness debates in social welfare to a new domain by exploring how deservingness features in the experiences of people who are in paid work when diagnosed with cancer. In doing so, it explores the interrelationship between deservingness criteria and Parsons' sick role. Narrative interview data was collected from people with cancer who were employed when they were diagnosed (n = 14) and line managers with experience of managing an employee with cancer (n = 7). Semi-structured interviews were conducted with members of occupational health and human resources staff (n = 3), health care professionals (n = 5) and staff from a UK cancer support charity (n = 7). Data was analysed thematically. Deservingness featured, and mattered, in how participants understood cancer in relation to work, and ensuing workplace interactions. Though cancer was generally seen as deserving; employees with cancer were perceived to be in need, and not blamed for their condition, this deservingness was subject to question. Employees with cancer were not necessarily considered equally deserving, dependent on their contribution as workers pre-diagnosis, and their efforts to contribute since being diagnosed. In a reflection of the fixed-term, time constricted nature of the sick role, work and welfare institutions required a definite timeline for employees to return to, or depart from work. The paper evidences an important gap between the fixed sick role as perceived by employers and the UK state welfare system, and the complex experiences of people diagnosed with cancer when in paid work.


Attitude to Health , Employment/psychology , Neoplasms/psychology , Humans , Interviews as Topic , Sick Role , Social Welfare , United Kingdom
14.
Psychooncology ; 28(7): 1477-1482, 2019 07.
Article En | MEDLINE | ID: mdl-31046153

OBJECTIVE: Diagnosis and treatment of breast cancer are psychologically stressful events, and hope and hardiness have been found to be important constructs for women with breast cancer. Therefore, this research sought to examine the relationships of perceived stress and hardiness with hope, and the buffering role of hardiness in the link between perceived stress and hope among Iranian women with breast cancer. METHODS: Two hundred and twenty Iranian women with breast cancer from three hospitals completed online measures evaluating perceived stress, hardiness, and hope. RESULTS: Using structural equation modelling, perceived stress was found to be negatively related to hope. Additionally, there was a positive relationship between hardiness and hope. The findings indicate that hardiness is a buffer in the link between perceived stress and hope for women with breast cancer. CONCLUSIONS: These findings demonstrate the importance of hardiness in reducing the effects of perceived stress on hope and have clinical implications for health professionals.


Adaptation, Psychological , Breast Neoplasms/psychology , Hope , Resilience, Psychological , Sick Role , Adult , Female , Humans , Iran , Life Change Events , Middle Aged , Stress, Psychological/psychology
15.
Aktuelle Urol ; 50(4): 392-397, 2019 Aug.
Article De | MEDLINE | ID: mdl-31067579

BACKGROUND: Online support groups are discussion boards on the internet in which users exchange experience, advice and information. The Bundesverband Prostatakrebs Selbsthilfe e. V. (BPS) operates the largest German-language internet forum for prostate cancer patients. MATERIALS AND METHODS: Several aspects of the BPS Forum were examined: content analysis, language use and interaction, influence on treatment decisions, comparison with conventional face-to-face support groups, and use by relatives and friends. RESULTS: The online support group is dominated by a tentative style of communication with reserved language features. In addition to the exchange of information, emotional support seems to be very welcome to many users and represents an essential part of the exchange. The use of the internet forum leads to a change in the initial treatment decision in 29 % of patients. In comparison with the general population, rates of patients with anxiety and depression were two to three times as high among the users. Compared with the patients themselves, family members in particular had higher values for anxiety and depression and described a higher rate of metastatic diseases in the patients known to them. Users of the online support group were younger, had a higher educational level and a higher income than participants in conventional face-to-face support groups. CONCLUSIONS: Online support groups are rated positively by their users and contribute to the acquisition of information and emotional support. They probably have a significant influence on the primary treatment decision and thus actively shape the reality of care for prostate cancer patients.


Online Systems , Prostatic Neoplasms/psychology , Self-Help Groups , Sick Role , Caregivers/psychology , Germany , Health Information Exchange , Humans , Male , Prostatic Neoplasms/therapy , Self Care/psychology
16.
J Eval Clin Pract ; 25(6): 1003-1009, 2019 Dec.
Article En | MEDLINE | ID: mdl-31107585

In this paper, I will consider, from a number of philosophical and real-life perspectives, what happens to us when we fall ill and what the experience of falling ill tells us about the nature of our being. I will take up the oft used Myth of the Cave from Plato's Republic and use this as a means to interpret the experience of falling ill. Plato gave us the allegory to show that what we think we know might not be all there is to know and that what we take for truth may not, at least, be the whole truth. I will argue that The Myth of the Cave provides an allegorical basis for coming to understand ourselves as finite and mortal through the experience of illness. We emerge from the dark safety of our everyday lives into the world of illness; this brings us up short as we come face to face with our own mortality. To make the argument, I will use examples from my own experience of illness and some of those other which have been recounted to me. I will also refer to the work of Havi Carel on illness and mortality, the conception of illness as leading to a feeling of not-being-at-home with our bodies (unheimlich) discussed by Frederick Svenaeus, and Gadamer's notion of illness as a loss of equilibrium. Underpinning the argument throughout will be Heidegger's existential analysis of dying in which he discusses the experience of anxiety and the way that separates us from the world of involvements.


Attitude to Death , Critical Illness/psychology , Illness Behavior , Sick Role , Humans , Philosophy, Medical
17.
Qual Health Res ; 29(11): 1661-1673, 2019 09.
Article En | MEDLINE | ID: mdl-31079542

In this article, we examine the arguments made by authors of published academic articles concerning the debates surrounding chronic Lyme disease (CLD). CLD is an example of a contested condition and shares problems of legitimacy with other medically unexplained conditions such as chronic fatigue syndrome. We use a critical discourse analysis (CDA) approach to understand the arguments of the authors to establish the legitimacy, or not, of a CLD diagnosis. This enabled us to make sense of the nature of the stalemate between patient groups and advocates of the medical establishment, as performed by authors of academic articles. In this article, we bring together the arguments to explain the polemical debate and to support accounts that avoid the impasse to give us greater insight into the experience of chronic illness.


Lyme Disease/diagnosis , Chronic Disease , Evidence-Based Medicine , Humans , Lyme Disease/pathology , Patient Acceptance of Health Care , Sick Role
18.
Metas enferm ; 22(4): 19-27, mayo 2019. graf, tab
Article Es | IBECS | ID: ibc-183558

Objetivo: conocer la práctica habitual de los profesionales expertos en ostomías en España. Explorar los usos y las actitudes del paciente ostomizado, así como su calidad de vida (CdV). Método: estudio retrospectivo nacional (U&A en Ostomía) con 148 participantes que recogieron datos clínicos sobre pacientes ostomizados. El estudio estuvo abierto al empleo de cualquier dispositivo comercial. Los profesionales registraron datos demográficos, características de ostomía y dispositivo, escala DET para evaluación de la piel periestomal (0-15), estado anímico del paciente (0-10), escala Stoma-QoL (0-100) y cambios de hábitos. También se evaluaron las características más valoradas del dispositivo, así como la atención recibida y las sugerencias de mejora por los pacientes. Resultados: se incluyeron 871 pacientes (64% hombres, 36% mujeres; 57,5% colostomía, 28,6% ileostomía y 13,9% urostomía; 68,5% definitiva, 31,5% temporal; 75% neoplasia, 13,2% enfermedad inflamatoria intestinal y 11,8% causa no filiada). En el 55,35% se realizó y respetó el marcado preoperatorio. La puntuación media DET fue 1,7±2,7 (rango 0-13), la satisfacción global con el dispositivo 8,1±1,3 (rango 1-10) y la puntuación Stoma-QoL 57,8±10,3 (rango 11,5-100). El uso de dispositivos Coloplast se asoció a menor frecuencia de fugas (p< 0,036). El 89% de los pacientes acudió regularmente a la consulta de Enfermería experta en ostomía y valoró con 9,4 (0-10) la atención recibida. Conclusiones: U&A en Ostomía es el primer estudio a gran escala que evalúa la realidad clínica del paciente con ostomía en España. Se describen los usos y las actitudes de los pacientes hacia su condición. Se confirma la importancia del marcado preoperatorio y sus repercusiones en la CdV


Objectives: to understand the daily practice of those professionals who are ostomy experts in Spain. To explore the uses and attitudes of the ostomy patients and their quality of life (QoL). Method: a national retrospective study (U&A on Ostomy), with 148 participants who collected clinical data about ostomy patients. The study was open for the use of any marketed device. Professionals collected demographical data, characteristics of ostomy and device, the DET score for evaluating the peristomal skin (0-15), the mood of the patient (0-10), the Stoma-QoL scale (0-100), and changes of habits. There was also an assessment of the most highly valued characteristics of the device, care received and improvement suggestions by patients. Results: the study included 871 patients (64% male, 36% female; 57.5% with colostomy, 28.6% with ileostomy and 13.9% with urostomy; 68.5% were permanent and 31.5% temporary; 75% for neoplasia, 13.2% for inflammatory bowel disease, and 11.8% with undetermined causes). Pre-surgical markings were conducted and observed in 55.35% of cases. The mean DET score was 1.7±2.7 (range 0-13), overall satisfaction with the device was of 8.1±1.3 (range 1-10), and the Stoma-QoL score was 57.8±10.3 (range 11.5-100).The use of Coloplast devices was associated with a lower frequency of leaks (p< 0.036). Overall, 89% of patients attended regularly their appointments with the Ostomy Nurse, and their score for the care received was 9.4 (0-10). Conclusions: U&A in Ostomy is the first large-scale study evaluating the clinical reality of the ostomy patient in Spain. It describes the uses and patients attitudes towards their condition. The importance of pre-surgical marking was confirmed, as well as its impact on QoL


Humans , Young Adult , Adult , Middle Aged , Aged , Aged, 80 and over , Ostomy/methods , Ostomy/nursing , Sick Role , Attitude of Health Personnel , Office Nursing , Spain , Affect , Quality of Life , Nursing Care
19.
Psychol Health Med ; 24(7): 827-835, 2019 08.
Article En | MEDLINE | ID: mdl-30821471

Despite improvement in the cancer treatment modalities, recurrence is still common. This study was conducted to explore Jordanian colorectal cancer patients' experience during the recurrence phase. Phenomenology - Qualitative design with semi-structured individual interviews with open questions was used. Three main themes and several subthemes were emerged: (1) adequate information and support from professionals (helpful relationship with professionals and disease orientation), (2) disease and treatment impact (being shocked, uncertainty, losing autonomy, isolation, and discomfort), and (3) seeking complementary treatment (spiritual activities and complementary therapy). The results can be helpful in increasing our understanding of the CRC experience during recurrence phase.


Colorectal Neoplasms/psychology , Developing Countries , Neoplasm Recurrence, Local/psychology , Sick Role , Adult , Aged , Female , Humans , Jordan , Male , Middle Aged , Qualitative Research , Uncertainty
20.
Psychol Health Med ; 24(7): 781-787, 2019 08.
Article En | MEDLINE | ID: mdl-30714815

The aim of this study was to measure the prevalence of FCR among a sample of French lymphoma survivors and to determine factors associated with clinical levels of FCR. The study was conducted with two cross-sectional measures: sociodemographic and anxiety, depression as well as health-related quality of life (HRQoL) scores were measured at the baseline of the post-cancer period and FCR was evaluated during the first 3 years of survivorship. The prevalence of clinical levels of FCR (≥13) was evaluated by the Fear of Cancer Recurrence Inventory - Short Form (FCRI-SF) among non- and Hodgkin lymphoma survivors undergoing prior first-line chemotherapy. Among 108 lymphoma survivors with an average follow-up of 1.6 years (range 0.3-3.0 years), clinical levels of FCR (≥13) were observed for 44.4% (n = 48). Multivariate analysis indicated that baseline anxiety and low quality of life were related to clinically significant FCR levels.


Anxiety/psychology , Cancer Survivors/psychology , Depression/psychology , Fear , Hodgkin Disease/psychology , Lymphoma, Non-Hodgkin/psychology , Neoplasm Recurrence, Local/psychology , Adult , Aged , Cross-Sectional Studies , Female , Follow-Up Studies , France , Humans , Male , Middle Aged , Quality of Life/psychology , Sick Role , Surveys and Questionnaires
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