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Questa ricerca esplorativa qualitativa si è posta l’obiettivo di comprendere il funzionamento del peer support in ospedale e le ragioni che spingono alcuni pazienti a diventare peer supporter. È stata realizzata un’ osservazione di tre reparti ospedalieri italiani in cui il peer support è praticato e successivamente sono state condotte 27 interviste agli attori coinvolti (peer supporter, pazienti, operatori). Uno sguardo internazionale si è avuto con la realizzazione di due interviste a peer supporter del King’s Hospital di Londra. I dati raccolti sono stati analizzati e interpretati alla luce del paradigma relazionale, secondo il quale il professionista da solo non è in grado di trovare delle soluzioni ad una malattia che colpisce una persona, ma necessita anche dell’aiuto della persona stessa per fronteggiare la situazione. Dalla ricerca è emerso che la presenza del peer support produce benefici per il reparto ospedaliero e tutti gli attori coinvolti: i pazienti conoscono meglio i servizi, i loro doveri e diritti e comprendono meglio alcune scelte terapeutiche del medico; i medici comprendono meglio i vissuti dei pazienti e le loro esigenze, si avvicinano al paziente e riescono a lavorare meglio; i peer supporter valorizzano il proprio sapere esperienziale e si sentono utili. / This exploratory qualitative reasearch identifies the reasons who leads patient to become peer supporter and explain peer support program in hospital ward. Three italian hospital ward, whose already have a peer support program, have been selected. Practicioners, patients and peer supporters were interview in these hospital departments (27 interviews in total), moreover each department was observed for three days to follow all the peer supporter’s activities. Thanks to two peer supporter’s interviews who worked at King’s Hospital in London was possible to have an international view. The collected qualitative data were then analyzed and interpreted according to the relational paradigm of social work. The idea of this approach is that social workers are not able to solve problems and to find solutions for the life problems; in the contrary professionals need to be helped from the service users. From the results emerged that the peer support program produce benefit for all people: the patients learned to know their rights and duties together with social and clinical services; the practitioners learned to know experiential knowledge, patient’s needs and how to work in a better way; the peer supporters learned to use their illness experience and feel useful.

Submitted by Fernando Souza (fernandoafsou@gmail.com) on 2017-09-04T16:07:28Z No. of bitstreams: 1 arquivototal.pdf: 1883442 bytes, checksum: a5d3026403594695296738ceebdbb8a5 (MD5) / Made available in DSpace on 2017-09-04T16:07:28Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 1883442 bytes, checksum: a5d3026403594695296738ceebdbb8a5 (MD5) Previous issue date: 2017-04-06 / Introduction: Within pediatric palliative care, nursing care should be provided in a comprehensive way, for both, strategies that favor a quality of life and well-being of the child with chronic illness and his family. Objective: To find out the guidelines used for nurses assistants for the promotion of healthcare aimed at children with chronic disease, in the light of Human Caring Theory. Methodology: Exploratory study with a qualitative approach. The research scenario for two reference hospitals in pediatrics in the state of Paraíba. The study was approved by the Research Ethics Committee of the HULW under protocol nº 1,268,255 and CAAE nº 48333415.3.0000.5183. Data collection took place between October 2015 and January 2016 through a semi-structured interview. The empirical material was analyzed by the Categorical Content analysis technique. Results: Through bibliometric indicators it was possible to see a growing dissemination of studies on the Human Caring Theory, which were predominant and the articles published in national journals between the years 2010 and 2011. The categorization of the data showed that goodness loving care in nurse care actions as well as health and health care are designed for participants as important to the promotion of palliative health care for the child with chronic illness and that the satisfaction that nurses feel when providing care works as a motivating factor for the quality of nursing care. Conclusion: As nurses have demonstrated that they consider the importance of palliative care for children with chronic illness, mainly in relation to their subjective principles and therefore they use care strategies based on loving kindness, not spiritual care and faith. This study opens new horizons on pediatric palliative care and demonstrates a feasibility of the adoption of the Human Caring Theory in nurses' practice of care. / Introducción: Dentro de los cuidados paliativos pediátricos, los cuidados de enfermería debe proporcionarse de manera integrada utilizando estrategias que mejoren la calidad de vida y del bienestar de niño con enfermedades crónicas y sus familias. Objetivo: Investigar las estrategias utilizadas por las enfermeras clínicas para promover los cuidados paliativos dirigidos a los niños con enfermedades crónicas, de acuerdo con la Teoría del Cuidado Humano. Metodología: Estudio exploratorio y cualitativo, cuya muestra correspondió a doce enfermeras. El marco de la investigación estaba en dos hospitales de referencia pediátricos en el estado de Paraíba. El estudio fue aprobado por el Comité de Ética de Investigación de la HULW en virtud del protocolo Nº 1.268.255 y CAAE 48333415.3.0000.5183. La recolección de datos se realizó entre los meses de octubre 2015 y de enero del año 2016 por medio de entrevista semiestructurada. El material empírico fue analizado por Análisis Categórico de Contenido. Resultados: Por medio de indicadores bibliométricos fue posible visualizar la creciente difusión de estudios sobre la teoría del cuidado humano, que predominó artículos originales publicados en revistas nacionales entre 2010 y 2011. La categorización de los datos ha puesto de manifiesto que, en bondad cuidados de enfermería, así como la atención espiritual y la fe están diseñados por los participantes como estrategias importantes para la promoción de los cuidados paliativos para niños con enfermedad crónica y la satisfacción de que las enfermeras se sientan en la prestación de funciones de atención como un factor de motivación para la mejora de la calidad de la atención de enfermería. Conclusión: Las enfermeras demostraron que entienden la importancia de los cuidados paliativos para los niños con enfermedades crónicas, especialmente en lo que respecta a los aspectos subjetivos y espera por lo lego de las estrategias de atención guiadas por la bondad, el cuidado espiritual y la fe. Este estudio abre nuevos horizontes sobre los cuidados paliativos pediátricos y demuestra la viabilidad de adoptar la Teoría del Cuidado de la práctica de enfermería. / Introdução: Dentro dos cuidados paliativos pediátricos, o cuidado de enfermagem deve ser provido de maneira integral utilizando, para tanto, estratégias que favoreçam a qualidade de vida e o bem-estar da criança com doença crônica e de sua família. Objetivo: Averiguar as estratégias utilizadas por enfermeiros assistenciais para promoção de cuidados paliativos direcionados à criança com doença crônica, à luz da Teoria do Cuidado Humano. Metodologia: Estudo exploratório com abordagem qualitativa, cuja amostra correspondeu a doze enfermeiras. O cenário de investigação foi dois hospitais de referência em pediatria no estado da Paraíba. O estudo foi aprovado pelo Comitê de Ética em Pesquisa do HULW sob protocolo nº 1.268.255 e CAAE nº 48333415.3.0000.5183. A coleta de dados ocorreu entre os meses de outubro de 2015 e janeiro de 2016 por meio de entrevista semiestruturada. O material empírico foi analisado mediante técnica de Análise Categorial de Conteúdo. Resultados: Por meio de indicadores bibliométricos foi possível visualizar a crescente disseminação de estudos sobre a Teoria do Cuidado Humano, os quais predominaram artigos originais publicados em periódicos nacionais entre os anos de 2010 e 2011. A categorização dos dados permitiu evidenciar que a bondade amorosa nas ações de cuidado do enfermeiro, bem como o cuidado espiritual e a fé são concebidos pelas participantes como importantes estratégias para a promoção dos cuidados paliativos a criança com doença crônica e que a satisfação que as enfermeiras sentem ao prover o cuidado funciona como um fator motivador para a melhoria da qualidade da assistência de enfermagem. Conclusão: As enfermeiras demonstraram que compreendem a importância dos cuidados paliativos à criança com doença crônica, principalmente no que se refere a seus aspectos subjetivos e por isso lançam mão de estratégias de cuidado pautadas na bondade amorosa, no cuidado espiritual e na fé. Este estudo abre novos horizontes acerca dos cuidados paliativos pediátricos e demonstra a viabilidade da adoção da Teoria do Cuidado Humano na prática assistencial do enfermeiro.

Health related outcomes for individuals with chronic symptoms of illness can be influenced by complex, socio-emotional processes. The primary interest of this study was to determine whether perceived social support lessens the negative emotional appraisals of illness experience (e.g. anger, fear, hostile interpretations of illness), and the role of these emotional appraisals in health outcomes for those diagnosed either with a conventional chronic illness (e.g. diabetes, arthritis, chronic obstructive pulmonary disease) or a functional somatic syndrome (e.g. fibromyalgia, chronic fatigue syndrome, irritable bowel). Data for this study were collected from a series of four surveys administered online, which included measures of perceived social support (MSPSS), emotional representations of illness (IPQ-R), and health outcomes (SF-36). The sample included 151 participants (129 Female, 22 Male), all of whom experienced chronic somatic symptoms for at least 3 months, with 57 classified as having a conventional diagnosis (CD) and 94 with a functional somatic syndrome (FSS). The results suggest a potential mechanism for the buffering effect of social support, such that those with higher levels of social support reported lower degrees of emotional representations. After controlling for demographic and illness-related variables, social support was a significant predictor of emotional representations of illness. Emotional appraisals of physical symptoms predicted a majority of the health dimensions of the SF-36; including social functioning, role limitations due to physical problems and emotional problems, emotional well-being, vitality, and overall perception of general health. The pattern of findings underscores the need to consider the influence of psychosocial processes on both psychological and physical well-being in populations adjusting to chronic illness.

La détresse psychologique est plus fréquente et sévère chez les patients atteints de maladies coronariennes (MC) que chez les individus sains. Nous en savons peu sur l’évolution dans le temps de ces différences et si ces différences s'étendent aux personnes atteintes de maladies non cardiovasculaires (CV). Objectifs: Examiner la présence, la sévérité et l'évolution de la détresse psychologique chez les hommes et les femmes atteintes de MC et celles du même âge souffrant de maladies non CV. Méthodes: 1294 personnes (61% d'hommes; moyenne = 60,4 ± 7,0 ans) atteintes de MC ou de maladies non CV ont été questionnées sur leur support social, leur degré d'hostilité, de stress, d'anxiété et de dépression au départ de l’étude (T1) ainsi que 4,8 ± 0,8 ans plus tard (T2). Des analyses à mesures répétées mixtes (sexe*statut MC*temps), de Chi carré et de McNemar ont été effectuées. Résultats: Les femmes atteintes de MC ont rapporté davantage de symptômes dépressifs que les autres participants aux deux évaluations (p’s<0,01), et davantage de symptômes d’anxiété et de stress que les autres participants au T1 (p’s <0,05). Au T2, le stress perçu demeurait significativement plus élevé chez les femmes atteintes de MC que chez les hommes (p’s<0,01), bien que les différences d’anxiété n’étaient plus significatives. Les hommes ont rapporté plus d'hostilité que les femmes (p=0,001). Les femmes souffrant de MC se situaient davantage dans la plage clinique de dépression (p<0,001), d'anxiété (p=0,001) et de stress (p=0,030) au T1, et de dépression (p=0,009) et de stress (p=0,002) au T2. Conclusion: L'intensité, la prévalence, et l’évolution de la détresse des patients diffère en fonction de la mesure examinée, de leur sexe et/ou de leur statut CV. Alors que la détresse psychologique était prédominante chez ces patients atteints de diverses maladies, les femmes atteintes de MC étaient particulièrement et chroniquement vulnérables. / Psychological distress is more prevalent and severe among patients with coronary artery disease (CAD) compared to healthy individuals. Little is known regarding its time course, and whether these differences extend to individuals with non-cardiovascular (CV) illnesses. Objective: This study examined the presence, severity, and time course of psychological distress in men and women with CAD and those of similarly aged individuals suffering from non-CV conditions. Methods: 1294 individuals (61% men; meanage = 60.4 ± 7.0 years) with stable CAD or non-CV illnesses reported on social support, hostility, stress, anxiety and depression at baseline as well as 4.8 ± 0.8 years later. Analyses involved mixed (Sex*CAD status*Time) repeated measures analyses (controlling for relevant covariates), as well as Chisquare and McNemar analyses. Results: Women with CAD reported more symptoms of depression compared to other participants at both evaluations (p’s<0.01), and reported more symptoms of anxiety and stress compared to others at T1 (p’s <0.05). At T2, perceived stress remained significantly greater among women with CAD compared to men (p’s<0.01), though differences in anxiety were no longer significant. Men reported more hostility than women (p=0.001). CAD women fell within the clinical range for depression (p<0.001), anxiety (p=0.001), and stress (p=0.030) more frequently compared to others at T1, and for depression (p=0.009) and stress (p=0.002) at T2. Conclusions: The evolution of patient distress differed as a function of the measure examined, their sex, and/or CV status. While psychological distress was prevalent among these patients with diverse health conditions, women with CAD were particularly and chronically vulnerable.

Introduction : La transition des soins pédiatriques aux soins pour adultes peut être difficile. Si elle est réalisée de façon sous-optimale, cela peut entraîner de graves conséquences. Afin de mesurer la préparation à la transition de patients adolescents et jeunes adultes (AJA), le Transition Readiness Assessment Questionnaire (TRAQ) a été développé. Les objectifs de l’étude sont de 1) documenter les propriétés psychométriques de la version française du TRAQ (TRAQ-FR), 2) évaluer le degré d’accord sur le TRAQ-FR entre les AJA et leurs aidants naturels et 3) identifier les prédicteurs de la préparation à la transition. Méthodologie : Des AJA francophones (n=175) et leurs aidants naturels (n=168) ont été recrutés dans cinq cliniques d’un hôpital tertiaire canadien et ont complété le TRAQ-FR, le Pediatric Quality of Life Inventory Version 4.0 (PedsQLTM 4.0) et un questionnaire sociodémographique. La validité du TRAQ-FR a été déterminée en réalisant des analyses factorielles confirmatoires. Les accords et différences ont été mesurés en calculant des corrélations intra-classe et des tests-t pour échantillons appariés. Des prédicteurs de la préparation à la transition ont été identifiés par des régressions multivariées. Résultats : Le modèle à cinq facteurs du TRAQ est soutenu par les données et l’échelle globale du TRAQ-FR montre une bonne cohérence interne pour les scores des AJA et des aidants naturels (a=.85-.87). Le degré d’accord absolu sur l’échelle globale du TRAQ-FR est bon entre les informants (ICC=.80; d=.25), les AJA rapportant un score plus élevé que leurs aidants naturels. L’âge et le sexe des AJA sont des prédicteurs de la préparation à la transition. Conclusion : Le TRAQ-FR a de bonnes propriétés psychométriques lorsqu’il est complété par les AJA et leurs aidants naturels. Des études futures devraient explorer la validité prédictive et l’utilisation clinique du TRAQ-FR. / Background: Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients’ transition readiness. In this study, we aimed to 1) document the psychometric properties of the French-language version of the TRAQ (TRAQ-FR), 2) assess agreements and discrepancies between AYA patients’ and their primary caregivers’ TRAQ-FR scores, and 3) identify transition readiness contributors. Methods: French-speaking AYA patients (n=175) and primary caregivers (n=168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ-FR, the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM 4.0), and a sociodemographic questionnaire. The validity of the TRAQ-FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intra-class correlation coefficients and paired-sample t-tests. Contributors of transition readiness were identified using regression analyses. Results: The five-factor model of the TRAQ was supported, with the TRAQ-FR global scale showing good internal consistency for both AYA patients’ and primary caregivers’ scores (a=.85- .87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ-FR global scale with AYA patients scoring higher than primary caregivers (ICC=.80; d=.25). AYA patients’ age and sex were found to be contributors of transition readiness. Conclusions: The TRAQ-FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ-FR.

Indiana University-Purdue University Indianapolis (IUPUI) / Shoulder pain was constantly reported as a problematic symptom causing dysfunction and quality of life interference after neck dissection in head and neck cancer patients. Due to a lack of conceptual framework and inconsistency of instrument selection, a comparison among previous studies was almost impossible, making it difficult to understand the phenomenon. The current study applied the University of California, San Francisco School of Nursing Symptom Management Model. The purposes of the study were to (a) describe the symptom experience of shoulder pain at 1 month after neck dissection, (b) describe the relationships among symptom experience of shoulder pain, functional status, and quality of life, and (c) identify the contextual variables, concurrent symptoms, and/or adherence predicting symptom experience of shoulder pain, functional status, and/or quality of life. This was a descriptive study with a convenience sample of head and neck cancer patients. The data were collected via a medical record review, a self-administered survey, and a physical examination. The data from 29 patients were entered for descriptive statistics, Pearson correlations, and multiple regressions. At 1 month after surgery, 62% of patients reported they had shoulder pain at some point within a week. Their shoulder pain was from mild to moderate. Fifty-nine percent complained that shoulder pain bothered them about the moderated level. In the final model, symptom experience, shoulder pain, was significantly correlated with one outcome, active shoulder abduction, but not the other, total quality of life, generic quality of life, and head and neck quality of life. Active shoulder abduction was significantly correlated with three quality of life measures. Adding significant predictors of symptom experience and outcomes into the final model, there is a potential that the model would be useful to guide treatment strategies. Treatment for myofascial pain of the levator scapulae could relieve shoulder pain after neck dissection and improve head and neck quality of life. Those with level V dissection were high risk populations of developing shoulder pain. Risk factors of quality of life, which were depression, loss of sensation, and radiation would describe how an intervention could change or unchange the patient’s life.

“Dysautonomia” or a dysfunction of the autonomic nervous system, affects approximately 70 million children and adults worldwide. Despite this, a small fraction of studies focus on the experiences of children and teenagers' living with conditions related to dysautonomia. The aim of this study is thus to explore the experiences and perspective of teenagers living with dysautonomia, by focusing on how they describe their lives in relation to being chronically ill and how they view the relationships among themselves, their doctors and their peers. The study entails a social constructionist and an interpretative phenomenological approach, which focuses on the lived experiences of the teenagers. To collect the data, an email questionnaire1 was conducted with 16 teenagers from different parts of the world. The data was analyzed with the help of a thematic analysis. Seven themes were identified under my areas of interest; a regular day, relationships with peers and relationships with doctors. The results indicated that dysautonomia, similar to other chronic illnesses, was reducing life quality. The results also indicated that most days were spent trying to distract themselves from their illnesses. The participants described feelings related to uncertainty, fear, loneliness and grief. Difficulties remaining socially active and maintaining friendships were described by some of the participants. Relationships with peers were described as both supportive and unsupportive and were often described in terms of healthy and sick peer groups. The doctor-patient relationship was described in terms of good and bad qualities. Although all participants described feeling dismissed, belittled and accused of making their symptoms and illnesses up in their heads, some also described the opposite - the good and respectful listener, who valued the autonomy of the participants.

No description available.