O objetivo deste trabalho é compreender a vivência das famílias de crianças com insuficiência renal crônica submetidas à diálise peritoneal, a fim de subsidiar os cuidados de enfermagem, levando em conta a qualidade de vida e a promoção da saúde da família. O referencial teórico fundamenta-se em Enfermagem Familiar na Promoção da Saúde. Os sujeitos deste estudo foram famílias de crianças com insuficiência renal crônica em diálise peritoneal. Os dados foram coletados por meio de entrevista em profundidade, leitura de prontuários e através da construção do genograma e ecomapa. Participaram 4 famílias, totalizando 13 membros. A Promoção da Saúde nas famílias consiste em um processo que tem início com a avaliação da família, através de um levantamento de dados. O Suporte Social e a Rede Social com os quais as famílias mantêm contato não têm suprido todas as necessidades de apoios. A Comunicação da equipe de saúde com a família tem sido controladora leve e pesada e a da família é identificada por ser controladora e pequena. A doença afeta os papéis de pais, filhos e irmãos e a troca de papéis é comum nestas famílias. Após a experiência da doença e da terapêutica em seu cotidiano, as famílias relatam a mudança de significado em suas vidas. Devemos considerar no cuidado a criança doente, os membros da família, a unidade familiar e o contexto em que está inserida. O plano de intervenção para a Promoção da Saúde deve ser realizado com a família, em um diálogo permanente com os membros, procurando contribuir para o seu desenvolvimento. / The aim of this study was to learn about the experience of families of children with chronic renal insufficiency submitted to peritoneal dialysis in order to subsidize nursing care by taking into account such families’ quality of life and health promotion. The methodology was based on Family Nursing in Health Promotion. The subjects in the study were families of children with chronic renal insufficiency undergoing peritoneal dialysis. The data were collected by means of comprehensive interviews, medical chart readings and the construction of a genogram and an ecomap. Four families participated, comprising a total number of 13 members. Health promotion in the families consists of a process that is begun by evaluating the family through data collection. Social Support and the Social Network with which the families keep contact have not met all their support needs. The health team’s Communication with the family has been light control and heavy control and the family’s is identified as being small talk and control talk. The disease affects the Roles of parents, children and siblings and role changes are common in such families. After experiencing the disease and the therapeutics in their daily lives, the families report a change in the meanings of their lives. The diseased child, family members, family unity and the context in which the family is must be taken into account. The intervention plan aiming at health promotion must be performed with the family by means of a permanent dialogue with its members, always aiming at contributing to its development.

O idoso com insuficiência renal crônica terminal (IRCT) em tratamento de Diálise peritoneal ambulatorial contínua (DPAC) requer maior atenção da família frente às dificuldades decorrentes. Assim, este estudo tem como objetivos: caracterizar os idosos com diagnóstico de IRCT em tratamento de DPAC, atendidos em uma Unidade Nefrológica de um Hospital Escola do interior paulista, bem como seus respectivos cuidadores familiares, e descrever o processo de cuidar desses idosos. Trata-se de um estudo de caráter qualitativo em que se utilizou como técnica de coleta de dados a história oral temática. Foi adotada a análise temática dos dados segundo Minayo. Participaram do estudo nove cuidadores familiares de idosos com IRCT em tratamento de DPAC. A coleta de dados foi realizada no domicílio dos cuidadores, no período de agosto de 2007 a janeiro de 2008. Quanto à caracterização dos idosos, 55,6% eram homens; média de idade de 70 anos; 88,9% eram casados; 88,9% aposentados e 55,6% recebiam 1 salário mínimo (SM); o tempo em que permaneceram recebendo cuidados foi em média 2,4 anos e todos eram dependentes de outra pessoa para realizar a troca de bolsa de diálise. Em relação aos cuidadores, 88,9% eram mulheres, 77,8% casados, com média de idade de 41,5 anos. Em relação à renda, 66,7% recebiam entre 2 a 4 SM e 22,2% 1 SM e o tempo dedicado ao cuidado representou 8horas/dia. A análise dos dados revelou quatro categorias: O impacto da IRCT e do tratamento para o idoso e o cuidador; O processo de cuidar do idoso com IRCT em DPAC no domicílio; Reações do cuidador frente à experiência de cuidar do idoso com IRCT no domicílio e Sistemas de suportes e recursos para o cuidado do idoso no domicílio. O estudo revelou a necessidade de atuar junto à família, na tentativa de auxiliar o cuidador a desenvolver conhecimentos e habilidades para lidar com a demanda de cuidados que o idoso com IRCT exige, principalmente em relação à DPAC. / Elderly patients with terminal chronic renal insufficiency (TCRI) receiving Continuous Ambulatory Peritoneal Dialysis (CAPD) treatment demand greater attention from the family due to the difficulties deriving from the disease, including dialysis bag change. This study aims to: characterize elderly people with diagnosed TCRI under CAPD, who receive care at a Nephrology Unit of a teaching hospital in the interior of São Paulo, Brazil, as well as their respective family caregivers, and to describe the care process for these elderly. This is a qualitative study, using the thematic oral history for data collection. Thematic data analysis according to Minayo was adopted for data analysis. Study participants were nine family caregivers of elderly with TCRI under CAPD treatment. Data were collected at the caregivers homes between August 2007 and January 2008. As to the elderlys characterization, 55.6% were men; the mean age was 70 years; 88.9% were married; 88.9% retired and 55.6% received one minimum wage (MW); on the average, they had received care for 2.4 years and all clients depended on another person to change the dialysis bag. With respect to the caregivers, 88.9% were women, 77.8% married, with a mean age of 41.5 years. As for income, 66.7% received between two and four MWs and 22.2% received one MW. Eight hours per day were dedicated to care. Data analysis revealed four categories: the impact of TCRI and treatment for the elderly and the caregiver; the home care process for the elderly with TCRI under CAPD; reactions of the caregiver towards the experience of taking care of the elderly with TCRI at home; support systems and resources for home care delivery to the elderly. The study revealed the need to work with the family, in the attempt to help the caregiver to develop knowledge and skills to deal with the care demand the elderly with TCRI requires, mainly in relation to the CAPD.

by Tong Lai Wah, Christina. / Thesis (M.Phil.)--Chinese University of Hong Kong, 1999. / Includes bibliographical references (leaves 101-112). / Abstracts in English and Chinese. / Title Page --- p.i / Authorization Page --- p.ii / Signature Page --- p.iii / Acknowledgements --- p.iv / Table of Contents --- p.v-viii / List of Figures --- p.ix / List of Tables --- p.x / List of Append --- p.ix xi / Title Page --- p.xii / Abstract --- p.xiii / Chapter 1 --- Introduction --- p.14-15 / Chapter 2 --- Literature Review --- p.16-24 / Chapter 2.1 --- Introduction / Chapter 2.2 --- End-stage renal disease / Chapter 2.3 --- Continuous ambulatory peritoneal dialysis / Chapter 2.4 --- Patient participation / Chapter 2.4.1 --- Definition of participation / Chapter 2.4.2 --- Benefits of participation / Chapter 2.4.3 --- Problems of patient participation / Chapter 2.4.4 --- Application of patient participation / Chapter 2.5 --- Conclusion / Chapter 3 --- Methodology --- p.25-43 / Chapter 3.1 --- Introduction / Chapter 3.2 --- Overview of grounded theory / Chapter 3.3 --- Procedures / Chapter 3.3.1 --- Data generation / Chapter - --- Sampling / Chapter - --- Data gathering / Chapter - --- Data recording / Chapter 3.3.2 --- Data analysis / Chapter - --- Open coding / Chapter - --- Constant comparative analysis / Chapter - --- Categorization / Chapter - --- Axial coding / Chapter - --- Theoretical sensitivity / Chapter - --- Memoing / Chapter 3.3.3 --- Theory construction / Chapter - --- Core category / Chapter 3.4 --- Method application / Chapter 3.4.1 --- Data collection / Chapter - --- Sampling / Chapter - --- Interview / Chapter - --- Recording / Chapter 3.4.2 --- Data analysis / Chapter - --- Open coding / Chapter - --- Constant comparative analysis / Chapter - --- Categorization and Axial coding / Chapter - --- Theoretical sensitivity / Chapter - --- Memoing / Chapter 3.4.3 --- Theoretical construction / Chapter - --- Concept formation / Chapter - --- Concept development / Chapter 3.5 --- Credibility & Trustworthiness / Chapter 3.6 --- Conclusion / Chapter 4 --- Findings --- p.44-72 / Chapter 4.1 --- Introduction / Chapter 4.2 --- Core category: Integrative Restructuring / Chapter 4.3 --- Emotional Labour / Chapter 4.3.1 --- Entering the active zone / Chapter (a) --- Conditions to go into active zone / Chapter (b) --- Outcomes of emotional labour / Chapter (c) --- Strategies used for emotional labour / Chapter - --- Letting go of emotions / Chapter - --- Aligning cognitive consistency / Chapter - --- Maximizing ego / Chapter - --- Locating self / Chapter - --- Boosting power / Chapter i. --- Active control / Chapter ii. --- Building positive expectancies / Chapter iii. --- Covariance to positive expectancies / Chapter 4.3.2 --- Retreating into comfort zone / Chapter (a) --- Contexts of comfort zone / Chapter (b) --- Conditions to build comfort zone / Chapter (c) --- Strategies used within comfort zone / Chapter - --- Defending / Chapter - --- Relinquishing / Chapter - --- Anchoring / Chapter 4.3.3 --- Migrating between the two zones / Chapter (a) --- Conditions to initiate the move / Chapter (b) --- Covariance to the movement / Chapter (c) --- Strategies to make progress / Chapter 4.4 --- Conclusion / Chapter 5 --- Discussion --- p.73-92 / Chapter 5.1 --- Introduction / Chapter 5.2 --- Theoretical framework / Chapter 5.3 --- Core category: Integrative Restructuring / Chapter 5.4 --- Variables affecting the move to active zone / Chapter 5.4.1 --- Preparations / Chapter 5.4.2 --- Support / Chapter (a) --- Source of support / Chapter (b) --- Context of support / Chapter (c) --- Effects of support / Chapter (i) --- Effects upon support-seekers / Chapter (ii) --- Supporter's reaction to support-giving relationship / Chapter 5.4.3 --- Commitment / Chapter (a) --- Perception of the situation / Chapter (b) --- Cultural influences / Chapter 5.4.4 --- Control / Chapter 5.5 --- Conclusion / Chapter 6 --- Concluding Chapter --- p.93-100 / Chapter 6.1 --- Limitations / Chapter 6.2 --- Implications / Chapter 6.2.1 --- Practice / Chapter 6.2.2 --- Research / Chapter 6.2.3 --- Teaching / Chapter 6.2.4 --- Policy Making / Chapter 6.2.5 --- Summary / Chapter 6.3 --- Future research / Chapter 6.4 --- Reflections upon the study / Chapter 6.5 --- Conclusion / References --- p.101-112

Orientador: Bárbara Perez Vogt / Resumo: INTRODUÇÃO: Atualmente, várias sociedades internacionais reconhecem a presença da sarcopenia nas doenças catabólicas, como a doença renal crônica. Sarcopenia afeta qualidade de vida e atividades diárias dos indivíduos. O objetivo deste trabalho foi avaliar o diagnóstico, prevalência e associação de parâmetros clínicos e nutricionais com a sarcopenia em pacientes em diálise peritoneal (DP). MÉTODOS: Realizado busca ativa da sarcopenia em pacientes prevalentes em DP maiores de 18 anos. Avaliação da massa muscular pelo índice de massa apendicular (IMMA) e da função muscular pela força de preensão manual (FPM) foram realizadas. Diagnóstico de sarcopenia foi realizado de acordo com o European Working Group on Sarcopenia in Older People (EWGSOP) e sua gravidade foi avaliada por teste de velocidade de marcha (VM). Para análise estatística, foi utilizado teste Kolmogorov-Smirnov, seguido de qui quadrado ou exato de Fisher, Mann-Whitney ou Teste t de Student, de acordo com a distribuição dos dados. Posteriormente, foi realizada regressão logística multivariada. As variáveis com significância <0,1 na análise univariada foram incluídas no modelo de regressão. RESULTADOS: Foram incluídos cinquenta indivíduos em DP, média de idade de 55,74±16,22 anos, 52% eram mulheres. A prevalência de sarcopenia em DP foi de 10% (n=5), sendo 8% (n=4) considerados com sarcopenia severa. Comparando os grupos de pacientes de acordo com a presença de sarcopenia, foram encontradas diferenças significativas c... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: INTRODUCTION: Currently, several international societies recognize the presence of sarcopenia in catabolic diseases, such as chronic kidney disease. Sarcopenia affects quality of life and daily activities of individuals. The aim of this study was to evaluate the diagnosis, prevalence and association of clinical and nutritional parameters with sarcopenia in patients on peritoneal dialysis (PD). METHODS: Screening for sarcopenia was performed in prevalent patients in PD older than 18 years. Muscle mass by appendicular skeletal muscle mass index (ASMMI) and muscle function by handgrip strength (HGS) were evaluated. Sarcopenia was diagnosed according to the European Working Group on Sarcopenia in Older People (EWGSOP) and its severity was assessed by gait speed (GS). For statistical analysis, Kolmogorov-Smirnov test was used, followed by Chi-square or Fisher's exact test, Mann-Whitney or Student´s t Test, according to data distribution. Later, binary logistic regression was performed. Variables with significance <0.1 in the univariate analysis were included in the binary logistic regression model. RESULTS: Fifty subjects on PD were included, mean age 55.74±16.22 years, 52% female. Sarcopenia prevalence was 10% (n=5), and 8% (n=4) were classified as severe sarcopenia. Comparing the groups of patients according to the presence of sarcopenia, significant differences were found regarding body weight (55.34±7.01kg vs 70.78±15.60kg, p=0.003), body mass index (BMI) (22.75±1.45kg/m² vs 2... (Complete abstract click electronic access below) / Mestre

El texto completo de este trabajo no está disponible en el Repositorio Académico UPC por restricciones de la casa editorial donde ha sido publicado. / Introducción Las características de la vivienda son un factor importante para llevar a cabo adecuadamente el tratamiento de diálisis peritoneal (DP), sin embargo, no se conoce si estas condicionan la aparición de peritonitis. Métodos Se eligió una cohorte retrospectiva en pacientes que iniciaron DP dentro del periodo enero de 2002-diciembre de 2011 en el Hospital Nacional Guillermo Almenara Irigoyen. Se describieron los tiempos de seguimiento según la fecha de inicio de DP y la primera peritonitis u otros eventos (paso a hemodiálisis, trasplante, muerte o abandono). Las variables fueron evaluadas según su tipo, utilizando estadística descriptiva e inferencial. Resultados El análisis incluyó a 218 pacientes con una media de edad de 54 años ± 16. El principal lugar donde se realiza el procedimiento de DP es el dormitorio (77,3%), en su mayoría se encuentra limpio (54,3%), ordenado (71,3%) y despejado (61,8%). Los insumos para el procedimiento se almacenan bajo techo (95,7%) y el mismo paciente ejecuta el tratamiento en la mayoría de los casos (73,1%). La incidencia encontrada fue de 0,17 episodios/paciente-año. La media del tiempo de seguimiento fue de 975 días ± 750. De acuerdo al análisis realizado, no se encontraron resultados significativos que muestren la relación entre las variables de vivienda y el desarrollo de la primera peritonitis. Conclusión No se encontró asociación entre las condiciones de vivienda y el desarrollo de peritonitis en pacientes en tratamiento de DP. Es necesario evaluar y mejorar el programa de visitas domiciliarias.

末期腎衰竭乃是一種慢性並且會持續惡化的疾病，現時唯一的治療方案便是腎功能替代療法。在香港，一般新發現患有末期腎衰竭的病人，將會被安排進行持續性家居腹膜透析。接受持續性家居腹膜透析的病人均需遵照以下四項治療性方案(包括限制膳食和流質食物，服用處方葯物，及跟從腹膜透析的指引)，以減慢病程的惡化。以往有關病人遵照治療性方案的研究，大多側重於使用血液透析的病人及醫護專業人仕的評估。本研究的目的乃是從現正進行持續性家居腹膜透析的病人的觀點，去明白及解釋病人遵照治療性方案的模式。 / 此硏究採用混合方法硏究設計，並分兩期進行。在第一期的調查，173位病人自我評估其遵照治療性方案中四個環節的程度。調查結果顯示:參加對葯物及腹膜透析的遵照程度，比限制膳食和流質食物的遵照程度為高。再者，男性、較年青、或進行了透析治療一至三年的參加者，自覺其遵照程度比其他參加者為低。此調查結果將指導第二期硏究的最大變化採樣，方法是跟據參加者自我報告其遵照治療性方案的程度分為跟從及不跟從兩組，硏究採用立意取樣方法去選取36位不同性別、年齡、及透析年歷的參加者作第二期硏究的面談。整合第一期的調查及第二期的面談結果後，硏究為參加者遵照治療性方案的模式提供了解釋。 / 結果顯示參加者的遵照模式乃是一個浮動過程，此過程可分為三個階段: 起初的遵照模式、隨後的遵照模式、及長期的遵照模式。在起初的遵照模式階段，參加者嘗試嚴謹地遵照各項治療性方案，但體會到這是不能持久的。在進行了透析二至六個月後，參加進入隨後的遵照模式，透過試驗、監察及不斷的調校，參加者學會選擇性地去遵照某些治療性方案。當參加者接受透析三至五年後，他們開始進入長期的遵照模式，在這階段，參加者已能將自行修改了的治療性方案融入日常的生活當中。 / 參加者遵照治療性方案的浮動過程，乃是受其「抱怨失去自主及常規」和「嘗試挽回自主及常規」所驅使。此浮動情況在每個階段都會發生。除了透析年歷，影響參加者遵照治療性方案的決定性因素乃是其家人及醫護專業人仕的支持。參加並認為醫護專業人仕非常強調其需絶對遵照所有治療性方案，反眏現行以治療為本的照料模式。 / 此硏究在理論及臨床上皆有貢獻。在理論方面，此乃首個硏究確立接受持續性家居腹膜透析的病人，在遵照治療性方案的浮動過程中出現的三個階段。在臨床上，此三個階段的確立可作為策劃護理方案的參照，以幫助病人順利過渡各個階段。硏究的結果亦倡導醫療模式的轉變，即由以治療作主導的模式轉變為以病人為本的照料模式，授權病人在末期腎衰竭的治療過程中參與自我料理。 / End-stage renal disease (ESRD) is a chronic, progressive and debilitating illness with renal replacement therapy (RRT) as the only treatment modality. In Hong Kong, patients newly diagnosed with ESRD who require RRT are generally started on continuous ambulatory peritoneal dialysis (CAPD). Patients receiving CAPD are required to adhere to a renal therapeutic regimen comprising four components (dietary and fluid restrictions, and medication and dialysis prescriptions) to decelerate disease progression. Studies on patients' adherence have mainly focused on those undergoing haemodialysis and are generally from healthcare professionals' perspectives. The aim of this study was to understand and explain adherence from the perspectives of patients undergoing CAPD. / The study employed a mixed-methods design and was conducted in two phases. In phase I, a survey was conducted to examine 173 patients' self-reported adherence to the four components of the therapeutic regimen. Results showed that participants were more adherent to dialysis and medication prescriptions than to fluid and dietary restrictions. Moreover, participants who were male, younger or had received dialysis for 1 to 3 years rated themselves as more non-adherent than other participants. These findings guided the maximum variation sampling of 36 purposively recruited participants of different genders, ages, and duration of dialysis from the adherent and non-adherent groups for the phase II interview. The survey and interview data were merged in the interpretation of findings to provide an understanding of participants' adherence. / Findings indicate that participants' adherence was a dynamic process with three stages: initial adherence, subsequent adherence and long-term adherence. At the stage of initial adherence, participants attempted to follow instructions but found that strict persistent adherence was impossible. After the first 2 to 6 months of dialysis, participants entered the stage of subsequent adherence. Through experimenting, monitoring and making continuous adjustments, they learned to adopt selective adherence. The stage of long-term adherence commenced after participants had received dialysis for more than 3 to 5 years. At this stage, they were able to assimilate the modified therapeutic regimen into everyday life. / The dynamic process of adherence was driven by "grieving for the loss of autonomy and normality" and "attempting to regain autonomy and normality". The process was dynamic as there were fluctuations at each stage of the participants' adherence. In addition to the duration of dialysis, the major determinant influencing the participants' adherence was the support provided by family members and healthcare professionals. Moreover, participants perceived that the focus of care provision was on strict adherence to all components of the therapeutic regimen, reflecting a biomedical model of care. / This study has theoretical and clinical significance. Theoretically, this is the first study that identified three stages in the dynamic process of adherence among patients undergoing CAPD. Clinically, with reference to each stage identified, nursing interventions can be developed to help patients achieve a smooth transition throughout all the stages. The findings also call for a paradigm shift from the biomedical model of care to patient-centred care, so as to empower patients to engage in self-management of their ESRD. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Lam, Lai Wah. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references. / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese; some appendixes also in Chinese. / LIST OF TABLES --- p.xv / LIST OF FIGURES --- p.xvi / LIST OF ABBREVIATIONS --- p.xvii / LIST OF APPENDICES --- p.xviii / Chapter CHAPTER ONE --- INTRODUCTION / Introduction --- p.1 / ESRD and its management in the Hong Kong context --- p.2 / The research problem --- p.3 / Aim of the study --- p.6 / Overview of the thesis --- p.6 / Chapter CHAPTER TWO --- LITERATURE REVIEW / Introduction --- p.7 / Literature search strategies --- p.7 / The concept of adherence --- p.8 / Theoretical models used to understand adherence --- p.14 / Health belief model --- p.14 / Locus of control --- p.16 / Self-efficacy --- p.19 / Transtheoretical model --- p.22 / Measurement of adherence --- p.24 / Prevalence of adherence --- p.27 / Patients undergoing HD --- p.28 / Patients undergoing PD --- p.31 / Factors influencing patients’ adherence --- p.34 / Demographic and clinical characteristics --- p.34 / Social support --- p.37 / Knowledge about adherence --- p.39 / Chinese culture --- p.43 / Exploring adherence from patients’ perspectives --- p.47 / Adherence among patients undergoing dialysis in Hong Kong --- p.51 / An introduction to the concept of self-management --- p.52 / Summary --- p.53 / Chapter CHAPTER THREE --- METHODOLOGY / Introduction --- p.56 / Aim --- p.56 / Objectives --- p.56 / Operational definitions --- p.57 / Research design --- p.57 / The paradigm of mixed methods research --- p.58 / Justification for using a mixed methods design --- p.60 / Application of the mixed methods design --- p.61 / Phase I study --- p.67 / Sampling --- p.67 / Setting --- p.67 / Sampling method and sample size --- p.67 / Data collection method --- p.68 / Instrument --- p.68 / Data collection procedures --- p.70 / Data analysis --- p.70 / Pilot Study --- p.71 / Validity and reliability --- p.72 / Phase II study --- p.74 / Sampling --- p.74 / Sample size --- p.74 / Sampling method --- p.75 / Data collection method --- p.80 / Semi-structured interview --- p.80 / Development of the interview guide --- p.81 / Data collection procedures --- p.82 / Making contact with participants --- p.82 / The interviewing process --- p.83 / Data analysis --- p.87 / Pilot study --- p.89 / Rigour of the study --- p.91 / Credibility --- p.91 / Dependability --- p.95 / Confirmability --- p.95 / Transferability --- p.95 / Ethical considerations --- p.96 / Summary --- p.98 / Chapter CHAPTER FOUR --- FINDINGS OF THE PHASE I STUDY / Introduction --- p.99 / Results --- p.99 / Participants --- p.99 / Demographic and clinical characteristics of the participants --- p.100 / Overall adherence to the therapeutic regimen --- p.103 / Number of days non-adherent to the therapeutic regimen --- p.103 / Degree of deviation from the therapeutic regimen --- p.104 / Adherence in relation to demographic and clinical variables --- p.106 / Summary --- p.109 / Chapter CHAPTER FIVE --- FINDINGS OF THE PHASE II STUDY / Introduction --- p.110 / Demographic and clinical characteristics of the participants --- p.110 / Major categories and subcategories identified --- p.115 / Perceptions of adherence --- p.117 / Meaning of adherence --- p.117 / Perceived needs to adhere --- p.118 / Perceived levels of adherence --- p.120 / The process of adherence --- p.123 / Initial adherence --- p.124 / Practising two major types of adherence --- p.124 / Striving to live with strict adherence --- p.124 / Doing what I am told --- p.124 / Trying my best --- p.125 / Exercising self-control --- p.127 / Adopting partial adherence --- p.128 / Recognizing limitations of current types of adherence --- p.129 / Sacrificing freedom for strict adherence --- p.129 / Social restriction --- p.129 / Having nothing to eat --- p.132 / Paying the price of inadequate adherence --- p.133 / Physiological complications --- p.134 / Need for additional treatment --- p.136 / Harsh comments from healthcare professionals --- p.137 / Realizing the need for changes in adherence --- p.139 / Rationalising an easy-going approach to adherence --- p.139 / Seeing the need for stricter adherence --- p.144 / Subsequent adherence --- p.146 / Experimenting with an easy-going approach to adherence --- p.147 / Allowing some slippage --- p.147 / Monitoring indicators of adherence --- p.148 / Making continuous adjustments --- p.149 / Adopting selective adherence --- p.153 / Long-term adherence --- p.158 / Factors influencing the process of living with adherence --- p.159 / Support --- p.159 / Family members --- p.159 / Healthcare professionals --- p.163 / Hope for the future --- p.165 / Situational factors --- p.168 / Dinning out --- p.169 / Employment --- p.171 / Summary --- p.173 / Chapter CHAPTER SIX --- DISCUSSION / Introduction --- p.177 / The dynamic process of adherence --- p.179 / Initial adherence --- p.182 / Following instructions --- p.182 / Grieving for the loss of autonomy and normality --- p.184 / Social restriction --- p.185 / Unmet nutritional and psychosocial needs --- p.187 / Subsequent adherence --- p.193 / Experimenting with an easy-going approach to adherence --- p.193 / Attempting to regain autonomy and normality --- p.198 / Dialysis --- p.199 / Medication --- p.201 / Fluid --- p.204 / Diet --- p.205 / Long-term adherence --- p.209 / Support as a major determinant of adherence --- p.212 / Family --- p.213 / Healthcare professionals --- p.216 / Biomedical model of care --- p.221 / Disease-oriented perspective --- p.222 / One-way paternalistic communication --- p.228 / Summary --- p.232 / Chapter CHAPTER SEVEN --- CONCLUSIONS / Introduction --- p.235 / Limitations of the study --- p.235 / Implications --- p.237 / Implications for clinical practice --- p.237 / Initial stage --- p.237 / Provision of timely appropriate support --- p.238 / Psychological support --- p.238 / On-site support --- p.239 / Adjustment of the CAPD training content --- p.240 / Empowering patients for self-management of their ESRD --- p.241 / Subsequent stage --- p.244 / Long-term stage --- p.245 / Implications for administration --- p.246 / Implications for nursing education --- p.247 / Recommendations for further research --- p.249 / Conclusions --- p.252 / REFERENCES --- p.254

Este estudo teve como objetivo geral analisar a evolução clínica e a QVRS de pacientes em Diálise Peritoneal (DP), dois anos após a primeira avaliação. Trata-se de uma pesquisa observacional, descritiva e analítica de delineamento longitudinal, realizada nos serviços de Diálise Peritoneal, no município de Ribeirão Preto, Estado de São Paulo, entre 2010 e 2012, tendo sido aprovada pelo Comitê de Ética em Pesquisa sob número 1451/201. A primeira e a segunda etapas de coleta de dados foram realizadas pela pesquisadora, por meio de entrevistas, utilizando os instrumentos: Miniexame do Estado Mental, questionário de caracterização sociodemográfica, econômica, clínica e laboratorial e o Kidney Disease and Quality of Life. Foi realizada a análise descritiva dos dados sociodemográficos, clínicos, laboratoriais e de QVRS. Na análise da evolução da QVRS, foi utilizado o teste t pareado. Na determinação das variáveis preditoras de QVRS, foram empregados o teste t de Student e o Mann-Whitney, bem como o coeficiente de Correlação de Pearson. Na análise de sobrevivência, foram calculados o risco relativo não ajustado e o seu intervalo de confiança. Para estimar o risco de óbito, foram obtidas, também, as curvas de sobrevida pelo método de Kaplan-Meier, e na análise multivadiada, foram determinados os preditores de óbito, utilizando o modelo de riscos proporcionais de Cox. O nível de significância adotado foi de 5%. Dos 82 participantes da primeira etapa do estudo em 2010, na etapa de 2012 houve perda de seguimento de sete pacientes, 18 foram excluídos da avaliação da QVRS, e 23 tiveram como desfecho o óbito. Portanto 34 pacientes tiveram a QVRS reavaliada, em 2012. A maioria era mulher 21; (61,8%), idosa 19 (55,9%), com cor da pele branca 25 (73,5%), morava com o companheiro 25 (73,5%), aposentada 25 (73,5%), hipertensa 33 (97,1%), estavam em Díalise Peritoneal Ambulatorial Contínua (DPAC) 18 (52,9%), apresentavam níveis de hemoglobina 25; (73,5%) e produto cálcio/fósforo 29 (85,3%) normais e de paratormônio 24 (70,6%) alterados. O número de comorbidades e de complicações aumentou de 2,8 e 4,3 para 3,2 e 5,1, respectivamente. No período, o número médio de peritonites foi de 1,0 episódio, e a média de internações foi de 1,6 vez. Em relação à QVRS, após dois anos da primeira avaliação, os pacientes que permaneceram em DP apresentaram piora, nos escores médios do Funcionamento físico e Dor e melhora no Bem-estar emocional. As variáveis preditoras de piora da QVRS no Funcionamento físico foram a idade avançada e os maiores números de comorbidades e de complicações; esta última também foi preditora de piora da QVRS na dimensão Dor, enquanto o menor número de peritonite foi preditor de melhora na dimensão Bem-estar emocional. Sobre a análise de sobrevivência, o risco aumentado para o desfecho óbito e/ou menor sobrevida se relacionou com ter diabetes, ter quatro comorbidades ou mais, estar em DPAC, ter escore de QVRS na dimensão Funcionamento físico menor que 50. Conclui-se que a QVRS piorou nas dimensões Funcionamento físico e Dor e melhorou para o Bem-estar emocional, dois anos após a primeira avaliação. A pior QVRS, especificamente na dimensão Funcionamento físico, pôde ser considerada preditora de óbito / This study aimed to analyze the clinical evolution and HRQoL of patients under peritoneal dialysis (PD) two years after the first assessment. This is a longitudinal observational descriptive and analytical study performed in the Peritoneal Dialysis services in Ribeirão Preto, São Paulo state, between 2010 and 2012, previously approved by the Research Ethics Committee under number 1451/201. The first and second stages of data collection were performed by the researcher through interviews, using the following instruments: Mini Mental State Examination a questionnaire with sociodemographic, economic, clinical and laboratory data and the Kidney Disease and Quality of Life .A descriptive analysis of demographic, clinical, laboratory, and HRQoL data was performed. The paired t test was used for the analyzis of the HRQoL evolution. In order to determine the predictors of HRQoL, the Student\'s t test, the Mann-Whitney\'s test, and the Pearson\'s correlation coefficient were used. For the survival analysis, the unadjusted relative risk and its confidence interval were calculated. The risk of death was estimated through the Kaplan-Meier\'s survival curves. The predictors of death were determined by multivariate analysis through Cox proportional hazards model. The level of significance adopted was 5%. Out of the 82 participants in the first stage of the study in 2010, seven had been lost to follow in the 2012 step, 18 were excluded from the assessment of HRQoL and 23 had died. Therefore, 34 patients had HRQoL reassessed in 2012. Most were women 21 (61.8%), elderly 19 (55.9%), caucasian 25, (73.5%) lived with a partner 25, (73.5%), retired 25 (73.5%), hypertensive 33 (97.1%), under Continuous Ambulatory Peritoneal Dialysis (CAPD) 18 (52.9%), with normal hemoglobin 25 (73.5%) and calcium-P product levels 29 (85.3%) and altered parathyroid hormone levels 24 (70.6%). The number of comorbidities and complications increased from 2.8 and 4.3 to 3.2 and 5.1, respectively. During the follow-up period, the average number of peritonitis episodes was 1.0, and the average number of hospitalizations was 1.6. Regarding HRQoL, two years after initial assessment, patients who remained on PD had worse mean scores of Physical functioning and Pain and better Emotional well- being. The predictors of worsening HRQoL Physical functioning were older age and greater numbers of comorbidities and complications. A greater number of complications was also a predictor of worsening HRQoL Pain, whereas a lower number of peritonitis episodes was predictive of improvement in the Emotional well- being dimension. On the survival analysis, the increased risk for the outcome of death and/or shorter survival was associated with having diabetes, having four or more comorbidities, being under CAPD and having a HRQoL score smaller than 50 in the Physical functioning dimension. It was concluded that HRQoL was worse in the Physical functioning and Pain dimensions and improved in the Emotional well-being dimension two years after the first assessment. Worse HRQoL, specifically in the Physical functioning dimension, was a predictor of death

Em 2006, a Diálise Peritoneal representou, no Brasil, o método de tratamento de 9,3% dos pacientes com Insuficiência Renal Crônica Terminal. A terapia dialítica provoca uma lesão na membrana peritoneal de característica inflamatória, com grave desbalanço do processo oxidativo. Associa alto transporte de solutos e perda da capacidade de ultrafiltração da membrana. Vários fatores contribuem para a lesão, tais como a bioincompatibilidade das soluções de diálise peritoneal e sua elevada concentração de glicose. O objetivo do presente estudo é avaliar o efeito protetor da N-acetilcisteína na lesão provocada pelo uso de solução dialítica hipertônica em modelo experimental de diálise peritoneal. Foram estudados 22 ratos Wistar, machos, não-urêmicos, divididos em quatro grupos, sendo: um grupo-controle, não submetido à infusão de SDP; o grupo RL, que recebeu infusão diária de solução ringer lactato; o grupo SDH, que recebeu infusão de SDP e, finalmente, o grupo SDH+NAC, que recebeu infusão de SDP e tratamento com N-acetilcisteína via oral, diariamente (600mg/L). Após seis semanas, foi realizada avaliação funcional da membrana peritoneal pela relação uréia do dialisato, com uma hora de permanência na cavidade peritoneal, e plasma (D/P uréia), assim como pela razão entre a concentração de glicose no líquido peritoneal após uma hora de permanência na cavidade e a concentração de glicose na solução de diálise infundida (G1/G0). As substâncias reativas do ácido tiobarbitúrico (TBARS) foram utilizadas como marcadores no processo oxidativo. A concentração de TBARS foi avaliada em amostra de urina 24hs e dosagem no plasma. Comparada ao grupo-controle, a avaliação funcional do grupo SDH apresentou aumento do transporte peritoneal com D/P uréia de 0,67±0,1 vs 0,46 ± 0,05 (p: 0,03) e G1/G0 de 0,27±0,07 vs 0,44±0,08 (p: 0,01), demonstrando lesão funcional importante. Quando avaliado o grupo SDH+NAC, tratado com N-acetilcisteína e o grupo não tratado SDH, foi observado maior transporte de solutos do grupo não tratado, com D/P uréia 0,67±0,1 vs 0,51 ± 1(p: 0,03) e G1/G0 de 0,27± 0,07 vs 0,35 ± 0,06 (p:0,01). Portanto, foi constatada maior lesão de membrana comparada ao grupo tratado. Comparados ao controle, os grupos SDH e SDH+NAC apresentaram maiores concentrações de TBARS, seja pela dosagem urinária (p:0,002), seja pelo TBARS plasmático (p:0,0001). O grupo tratado SDH+NAC apresentou menores concentrações de TBARS, comparado ao grupo não tratado SDH, provavelmente por um efeito protetor da Nacetilcisteína. Quando avaliada a membrana peritoneal parietal, o grupo tratado apresentou menor espessamento de membrana, medido em micrômetro, em relação ao grupo não tratado (p:0,01) O presente estudo sugere que a lesão da membrana peritoneal provocada pelo uso de solução dialítica hipertônica sofre uma forte influência do processo oxidativo e que o uso contínuo de N-acetilcisteína, por via oral, pode ter efeito redutor dessa lesão. / Peritoneal Dialysis represents the modality of treatment for 9.3% of end stage renal disease patients in Brazil. During the period of treatment, the solution induced a peritoneal membrane lesion of inflammatory characteristic. Oxidative stress has been implicated in the development of endothelial damage. It associates the high transport of solutes and loss of ultrafiltration capacity of the membrane. The lesion is caused by several factors as follows: peritoneal dialysis solution incompatibility (PDS) and its increased concentration of glucose. The aim of the present study was to evaluate the N-acetylcysteine protecting effect on lesion aggravated by the use of hypertonic dialytic solution in peritoneal dialysis experimental model. Twenty two male, non-uremic Wistar rats were divided in four groups as follows: (I) control group, not submitted to PDS infusion; (II) RL group receiving daily infusion of ringer lactate; (III) HDS group, receiving PDS infusion, and; (IV) HDS+NAC group receiving PDS infusion and treated with N-acetylcysteine (600mg/L) orally. The peritoneal membrane functional evaluation was performed six weeks later by the dialisate-to-plasma urea, ratio (D/P), and glucose reabsorption determined by the ratio of glucose concentration in peritoneal fluid after one hour of solution permanence in the cavity (G1/GO). The thiobarbituric acid reactive substances (TBARS) were used as markers on studying the oxidative process. The TBARS concentration was assessed in 24h sampling urine and plasmatic dosage. The functional evaluation for the HDS group showed increased peritoneal transport compared to the control group with urea D/P of 0.67±0.1 versus 0.46±0.05 (p:0.03), and G1/GO 0.27±0.07 versus 0.44±0.08 (p:0.01), demonstrating functional lesion. When evaluating the HDS+NAC group, treated with N-acetylcysteine and the HDS non-treated group, a greater transport of solutes was observed for the non-treated group, with urea D/P 0.67±0.1 versus 0.51 ± 1 (p: 0.03), and G1/GO 0.27±0.07 versus 0.35±0.06 (p: 0.01), therefore greater lesion present on the membrane than for the treated group. Compared to the control group, the HDS and HDS+NAC presented greater TBARS concentrations either for urine dosage (p: 0.002) or for plasmatic TBARS (p: 0.0001). The HDS+NAC treated group showed lower TBARS concentrations compared to the non-treated HDS group, a probable protective effect of Nacetylcysteine on the treatment. In the treated group, peritoneal membrane demonstrate lower trickiness compared with untreated group.(p:0,01) The present study suggests that the peritoneal membrane lesion induced by the use of hypertonic dialytic solution undergoes strong influence from the oxidative process and that the continuous use of N-acetylcysteine can preserve these alterations by inhibiting the oxidative stress within the peritoneal membrane.

Bakgrund: Antal personer som lever med kronisk njursvikt ökar med befolkningsökningen. Peritonealdialys är en vanlig livsuppehållande behandling för patienter som lever med kronisk njursvikt som främst sköts av patienter i hemmet. För att kunna fortsätta leva med sjukdomen under kontroll kräver peritonealdialys införande av nya livsförändringar som på olika sätt kan vara påfrestande för patienterna. Syfte: Syftet var att beskriva patienters upplevelser av att leva med peritonealdialys i sin vardag. Metod: Litteraturöversikten baserades på elva vetenskapliga artiklar med kvalitativa ansatser hämtade från databaserna CINAHL complete och PsyINFO. Sökorden som användes vid artikelsökning var patient experience, living with" och "peritoneal dialysis" som vidare utökades till "perspective", "home dialysis, qualitative study och interview'' med års begränsning 2000- 2017. Resultat: Litteraturöversikten visade att patienternas upplevelser av att leva med peritonealdialys innefattade en livsförändringsprocess med upplevelser av övergång som en besvärlig vändpunkt i livet vilket började redan vid PD- initiering. De första sex månaderna var den svåraste tiden att hitta balansen och anpassa sig till ett nytt levnadssätt, under den perioden hade patienterna stora behov av stöd både från sjukvården och det egna sociala nätverket dels för att bearbeta de olika förluster och begränsningar relaterad till PD- behandlingen, dels för att upprätthålla motivationen för att fortsätta sköta sin behandling. Med tiden ökade patienterna upplevelser av oberoende självständighet i att hantera sin egenvård och deras behov av stöd minskade, stödet från sjukvården minskade till enbart rutinkontroller. Diskussion: Patienters upplevelser av att leva med PD diskuterades och analyserades utifrån Orems teori om egenvårdsbalans och tidigare forskning. Större delen av diskussionen understryker betydelse av sjukvårdpersonalens bemötande som kan såväl positivt som negativt påverka patienters upplevelser. Hur väl en patient lyckades med sin egenvård berodde mycket på bemötandet, anpassad information, typ av stöd i patientens sociala nätverk och vilka vårdinsatser patienten fick under behandlingsprocessen.

<p>Antalet personer med kronisk njursvikt ökar i Sverige, orsakat av att diabetesnefropati ökar, som en följd av att allt fler får diabetes mellitus typ 2. Peritonealdialys är en behandling för personer med kronisk njursvikt och kan skötas i hemmet. Syftet med studien är att beskriva hur peritonealdialys inverkar på dagligt liv bland personer med kronisk njursvikt. Studien genomfördes som en allmän litteraturstudie och vetenskapliga artiklar har sökts via elektroniska databaser och manuella sökningar. Femton artiklar granskades och analyserades med hjälp av innehållsanalys. Resultatet visade fyra kategorier som utgjordes av oberoende, delaktighet, förändring av välbefinnande och ny medvetenhet om kroppen. De olika kategorierna beskrev peritonealdialysens inverkan på personernas dagliga liv. Genom delaktighet i behandlingen får personen ett oberoende i dagligt liv. Förekomst av fatigue, oro och förändrad kroppsuppfattning kan inverka på personens livskvalitet. Behandling med peritonealdialys har inverkan både på den enskilde personen och på familjen. En beskrivning av peritonealdialysens inverkan på dagligt liv, kan förbereda distriktssköterskan i mötet och omvårdnaden av personer med peritonealdialysbehandling.</p> / <p>The number of persons with chronic renal failure is increasing in Sweden, caused by an increasing number of diabetes nephropathia, as a result of a larger number of diabetes mellitus type 2. Peritoneal dialysis is a treatment for persons with chronic renal failure and can be performed at home. The aim of the study is to describe the influence of peritoneal dialysis in the daily life of persons with chronic renal failure. The study was implemented as a general literature study and scientific articles have been acquired via electronic databases and manual searches. Fifteen articles were reviewed and analysed through content analysis. The results showed four categories consisting of independence, participation, change in well-being and new awareness of the body. The different categories described influence of peritoneal dialysis in daily life. By means of participation in the treatment the person gets independence in daily life. The existence of fatigue, anxiety and change of body image can influence a person’s quality of life. Treatment with peritoneal dialysis can influence both the individual and the family. A description of influence of peritoneal dialysis in daily life can prepare the district nurse in the meeting and nurturance of persons with peritoneal dialysis.</p>