The thesis deals with the application of NIC, NOC classifications in patients with stoma. Every nurse uses a classification system of health care which describes activities or interventions done by nurses as a part of planning phase of nursing process in connection with creation of nursing care plan. These classifications also focus on developement of nursing care objectives and evaluating of the effect of nursing care results. Due to these classifications, the nursing care results are mesurable. In the theoretical part of the thesis, we focus on classification systems of nursing care, then on GIT diseases which lead to insertion of stoma, its care, care of patients with stoma and last but not least, on nursing documentation. Several objectives were set to meet the main target of the thesis. Firstly, to map nurses' opinion on nursing classifications; secondly, to find out which NOC indicators are usually judged by nurses in the care of patients with stoma; thirdly, to find out which activities are usually used by nurses in the care of patients with stoma; fourthly, to check up on application of NIC, NOC classification in the care of patients with stoma. The qualitative reserch was hold in two phases. In the first phase of the qualitative research, a nursing documentation was created on the basis of NIC and NOC classification related to care of the patients with stoma. In the second phase of the qualitative research, we interviewed ten nurses who had worked with the particular nursing documentation.

Bakgrund: Stomi innebär en konstgjord öppning på buken. Vanligaste orsakerna till att en person får stomi är kolorektal cancer, blåscancer, chrons sjukdom och ulcerös kolit. Den stomiopererade personens vardag påverkas ofta på grund av kroppsförändringar. Dessa kroppsförändringar innebär exempelvis nya hygienrutiner samt förlust av kroppsfunktion. Syfte: Att beskriva hur vuxna personer med stomi upplever sin vardag. Metod: Litteraturöversikt med induktiv ansats. Insamling av kvalitativa artiklar genom sökning i databaserna Cinahl och Medline. Sammanlagt användes nio vetenskapliga artiklar i litteraturöversiktens resultat. Artiklarna analyserades med hjälp av Fribergs tre-stegsmetod. Resultat: Tre huvudteman identifierades vilka var psykologiska aspekter, fysiska aspekter samt sociala aspekter. Under dessa framkom subteman som visade på att personer med stomi bland annat upplevde rädsla och oro i vardagen, begränsning i klädval samt aktiviteter. Resultatet visade även en påverkan i intima situationer. Slutsatser: Upplevelse av begränsning ses som vanligt förekommande hos stomiopererade personer och påverkar deras vardag. Stöd från sjuksköterska, familj samt vänner är betydelsefullt och kan hjälpa till att hantera situationen. / Background: Stoma is an artificial opening in the abdomen. Common reasons why a person might acquire stoma is colorectal cancer, bladder cancer, Crohn's disease and ulcerative colitis. The everyday life for a person with a stoma is often affected due to body changes. These body changes mean, for instance, new hygiene routines and loss of body function. Aim: To describe how adults with a stoma experience their everyday life. Method: Literature review with inductive approach. Qualitative articles were collected through searches in the databases Cinahl and Medline. In total, nine scientific articles were used as a result of the literature review. The articles were analyzed using Friberg´s three-step method. Result: Three main themes were identified; psychological aspects, physical aspects and social aspects. Under these main themes subthemes emerged that showed that people with a stoma among other experienced for instance fear and concern of everyday life, limited in choice of clothes and activities. The results also exposed an effect in intimate situations. Conclusion: Experience of limitation is common among persons with a stoma and affect their everyday life. Support from a nurse, family and friends are significant and can help the person with a stoma to manage the situation.

Background: Rectal cancer 5-year survival has increased from 58% of those diagnosed in 1987-1989 to 68% of those diagnosed in 2003-2009. Rectal cancer patients commonly receive one of two surgical treatments: permanent ostomy (a resection of tumor following by a stoma) or anastomosis (a resection followed by a reconnection with or without a prior temporary ostomy). The multifaceted consequences of both types of surgery potentially can affect both long-term psychological well-being and financial concerns of patients and their families. The overall goal of this dissertation is to increase the understanding of the impact of depression on the quality of life of rectal cancer survivors. Methods: The research data were based on a quality of life survey conducted in 2010-2011 among long-term survivors (≥ 5 years post-diagnosis) of rectal cancer. Participants were identified through the Kaiser Permanente (KP) health systems in Northern California and Southwest Washington/Oregon. Data included both the 2010/2011 survey data and KP electronic medical records (EMRs). Results: 1) The 24.7% prevalence of self-reported current depression among long-term rectal survivors was observed with a higher prevalence of 31% among those with permanent ostomies. Although average perceived financial burden level was low in this population of insured cancer survivors, 20% still reported moderate-to-high burden. Perceived financial burden was especially high among those who recalled having depression immediately after surgery and reported depression at the time of survey.2) All self-reported measures showed low sensitivity varying from 26% to 56% and high specificity from 77% to 82.7% against either diagnostic scheme from EMRs. Using either diagnostic scheme, the MCS-12 measure, a Mental Composite Summary (MCS) score from the 12-item Short-Form Health Survey with a cut-off point of≤45.6 for a self-reported depression, performed better as compared to the other two self-reported measures. 3) Approximately one in six rectal cancer survivors experienced depression after their surgery of sufficient severity to result in a depression diagnosis. Among survivors with recurrent depression diagnoses, those with a permanent ostomy reported significantly lower psychological well-being than those with an anastomosis. Conclusions: Depression burden is elevated after receiving surgery and remains a problem long after cancer diagnosis and treatment. Types of rectal cancer surgery received and gender of survivors may complicate the extent of depression burden. Among long-term rectal cancer survivors, having depression is associated with higher perceived financial burden. Chronic or recurrent course of depression may exist in this group of rectal cancer survivors and has significant impact on long-term psychological well-being. Self-reported measures for depression, such as MCS-12 measure with a cutoff point≤45.6, have the potential to be utilized for epidemiological studies when common screening instruments, electronic medical records, or administrative databases are not available. Implications: These findings underline the significance of depression assessments after surgery for this population of rectal cancer survivors and the importance of symptoms monitoring throughout the cancer survivorship continuum. Depressive symptoms should be monitored and managed as early as after cancer diagnosis and surgery to optimize survivors' long-term emotional well-being. In addition, depression screening and treatment as well as discussion of financial issues may have important roles in long-term survivorship care planning, particularly for those with permanent ostomies.

När en människa integreras med en stomi inom kroppsbilden kan sexualiteten förändras. Bakomliggande sjukdomsbild, komplikationer av operationen eller varandet med stomin kan utgöra ett hinder för utövande av människans sexualitet. Syftet med litteraturstudien har varit att beskriva vad sexualitet är för en människa med stomi. Litteraturstudien genomfördes med 10 vetenskapliga artiklar som analyserades till resultatet. Fem teman kunde urskiljas: Förlust, Oro, Ömsesidig öppenhet, Ny verklighet och Mindre annorlunda. Förekommande utmaningar för människan med stomi kan vara sexuella dysfunktioner samt intimitet. En oro kring läckage samt gas kan upplevas inom intima relationer samt att inte vara sexuellt attraktiv. Stomin kan uppfattas genant, både till utseende samt genom förlorad kroppsfunktion. Att inte se stomin som ett hinder kan människan uppleva en ny verklighet. Genom olika strategier kan människan med stomi underlätta sexuella relationer. Det påvisas brister inom informationshantering relaterat till sexualitet inför en människa ska integreras med en stomi. Aktuella omvårdnadsmodeller belyser vikten av att bedöma patientens sexualitet. En påverkad sexualitet kan uppstå hos en människa som integrerats med stomi, något som bör uppmärksammas inom omvårdnadsprocessen samt i vidare omvårdnadsforskning. / When a human is integrated with an ostomy on its body image, sexuality can change. Underlying illness, complications from surgery or the existence of the ostomy can constitute an obstacle for the human to exercise sexuality. The objective of this study was to describe what sexuality is for a human with an ostomy. The literature review was conducted by 10 scientific articles to the result. Five themes compiled: Loss, Anxiety, Mutual openness, New reality and Less different. Challenges for the human with an ostomy might be sexual dysfunctions and intimacy. One concern may be experienced around the leakages and the gas within intimate relationships also not being sexually attractive. The ostomy can be considered an embarrassment, both in appearance and by loss of body function. By not seeing the ostomy as an obstacle, the human can experience a new reality. Through various strategies, can a human with an ostomy, facilitate sexual relationships. Research highlights gaps in information related to sexuality before the surgery. Contemporary nursing models emphasize the importance of assessing the patient’s sexuality. An affected sexuality can occur amongst a human with an ostomy and something that should attend in the nursing process and in further research.

Bakgrund: En tarmstomi kan innebära stora fysiska och psykiska förändringar samt begränsningar i en patients liv. Kolorektalcancer och inflammatoriska tarmsjukdomar är de vanligaste orsakerna till tarmstomi. Stomiterapeuter är specialutbildade sjuksköterskor, när denna personalgrupp inte finns att tillgå, är det grundutbildade sjuksköterskors som tillgodoser omvårdnaden för patienten. Syfte: Att belysa patientens upplevelse av att leva med tarmstomi. Metod: En allmän litteraturöversikt baserad på elva kvalitativa artiklar. Resultat: Analysen resulterade i fyra teman. Påverkan i det dagliga livet, förändrade vanor som påverkade patientens liv. Kroppsuppfattningen, tarmstomin förändrade patientens syn på sin kropp. Stöd, om vikten av sjuksköterskans roll i omvårdnaden. Information, från sjuksköterskan utgjorde en viktig del i omvårdnaden av egenvård. Slutsats: Det är viktigt att sjuksköterskan i sin roll anpassar omvårdnaden individuellt samt beaktar patienten utifrån patientens individuella behov. Sjuksköterskans kan i sin roll motivera patienten till delaktighet i sin egenvård samt ge stöd för patienten till anpassningen av tarmstomin. Genom att förhålla sig till den personcentrerade vården kan sjuksköterskan beakta hela patientens upplevelse samt få en djupare kunskap av att förstå patientens upplevelse av att leva med tarmstomi. Fortsatt forskning: Som sjuksköterska är det viktigt att hela tiden ta del av aktuell forskning i syfte att förbättra omvårdnaden av patienter med tarmstomi. Vidare forskning behövs, då specifikt forskning saknades inom område personcentrerad- och tarmstomivård. / Background: An intestinal stoma could mean great physical and mental changes and restrictions in a patient's life. Colorectal cancer and inflammatory bowel diseases are the most common causes of intestinal stoma. Stoma therapists are specially trained nurses, when they are not available, it is ordinary nurses that cater to the care of the patient. Aim: To illuminate the patient's experience of living with intestinal stoma. Method: A general literature review based on eleven qualitative articles. Results: The analysis resulted in four themes. Impact on daily life, change of habits that affect the patient's life. Body image, intestinal stoma changed the patient’s view of their body. Support, the importance of the nurse's role in nursing. Information, provided by the nurse was an important element in the self-care. Conclusion: It is of importance that the nurses in their role adapts the care individually and take into account the patient based on the patient’s individual needs. The nurse can also motivate the patient to participate in self-care and provide support for the patient to the adjustment of the intestinal stoma. By relating to the person-centered care the nurse can take the patient’s whole experience into account and gain a deeper knowledge of understanding the patient’s experience of living with an intestinal stoma. Continued research: As a nurse, it is important to always take note of current research in order to improve the care of patients with intestinal stoma. Further research is needed, since specific research was lacking in the area person-centrered and intestinal stoma care

Bakgrund: Tarmsjukdomar är en bakomliggande orsak till att patienter ibland måste genomgå en stomioperation, akut eller elektivt. Stomin anläggs i permanent eller temporärt syfte. En stomioperation innebär en livsomställning för patienten, vilket kan medföra både fysiska och psykiska påfrestningar. Kroppsuppfattning och självkänsla hos en patient som genomgår en stomioperation förändras, men med hjälp och stöd från sjuksköterskan kan patienten återfå kontroll och höja känslan av egenvärde. Syfte: Syftet var att beskriva hur patienter upplever den information de får från och interaktionen de upplever med sjuksköterskan i samband med stomioperation. Metod: Kvalitativ litteraturstudie där 10 kvalitativa artiklar kvalitetsgranskats med hjälp av Forsberg och Wengströms (2013) checklista och analyserats utifrån Graneheim och Lundmans (2004) beskrivning. Resultat: Resultatet delades in i två huvudkategorier och åtta underkategorier. Studien påvisar att patienternas upplevelser av information och interaktion i samband med en stomioperation från sjuksköterkan påverkar deras anpassning till stomin och det dagliga livet. Resultatet visar en bristande kompetens hos sjuksköterskor i att informera och att interagera med patienterna. Slutsats: Patienterna upplevde på varierande sätt brister i information från och interaktion med sjuksköterskor i samband med stomioperation. Bristerna påverkade patienternas anpassning till stomin negativt och de kände sig inte redo att ta hand om egenvården hemma. Kommunikation är, enligt Travelbee, det viktigaste verktyget en sjuksköterska kan använda sig av för att etablera en god relation med en patient. / Background: Intestinal diseases may require patients to have a stoma surgery, acute or elective. The ostomy is either for a permanent or a temporary purpose. A stoma surgery is a life changing event for a patient, which can cause physical and psychological stress. Body image and self-esteem of the patient who are going through a stoma surgery changes and with the help and support from the nurse can help the patient to regain control and raise the sense of intrinsic value. Aim: The aim was to describe how patients perceive the information they received from and the interaction they experience with the nurse in conjunction with a stoma surgery. Method: A qualitative literature study, where 10 qualitative articles were quality reviewed with help from Forsberg and Wengströms (2013) checklist and analyzed using Graneheim and Lundmans (2004) description. Results: The result was divided in to two main categories and eight subcategories. The study indicate that patients' experiences of information and interaction in connection with stoma surgery from nurses affect their adaptation to the stoma and daily life. The results show a lack of competence from nurses to inform and to interact with patients. Conclusion: Patients experienced, in varying ways, deficits in information from and interaction with nurses in regard to a stoma surgery. These deficits affected the patients' adaptation to the ostomy negatively and they did not feel ready to perform the self-care at home. Communication is, according to Travelbee, the most important tool a nurse can use to establish a good relationship with a patient.

O objetivo deste estudo foi investigar a qualidade de vida do paciente com estoma intestinal secundário ao câncer cólon-retal na cidade de Aracaju-Se. Trata-se de estudo descritivo-exploratório, na vertente quantitativa, utilizando-se um instrumento contendo três partes, dados sócio-demográficos e clínicos, itens referentes à Escala de Qualidade de Vida de Flanagan (EQVF), e EORTC-QLQ-C-30. A amostra constou de 18 pacientes atendidos no Centro de Oncologia Dr Oswaldo Leite, localizado na cidade de Aracaju – Sergipe no período de janeiro a dezembro de 2005. Os instrumentos mostraram propriedades psicométricas satisfatórias quanto à consistência interna e validade do construto. Quanto às características sócio-demográficas e clínicas, 50% eram do sexo feminino, e 50% masculino. A média de idade foi de 51,3 anos. Quanto à localização do tumor, 38,9% tumor de reto, seguida de cólon-retal 33,3% e cólon 27,8%. 83,3% apresentavam metástase e 16,7% não apresentavam. Em relação ao tipo de estoma, 72,2% tinham colostomia definitiva e 27,8% colostomia provisória. 77,8% dos pacientes apresentaram menos de um ano de estoma e 22,2% mais de um ano de estoma. A análise de qualidade de vida da amostra mostra para EQVF média de 52,3 (DP=1,40) para EQVF Geral. Para EORTC QLQ-C30, a média estado geral de saúde foi de 35,64 (DP=12,39). Foram estatisticamente significativos os resultados obtidos nas escalas: relações com outras pessoas, atividades sociais e desenvolvimento pessoal e realização. Pacientes com menos de um ano de estoma, apresentam maior atividade social,desenvolvimento pessoal e realização do que aqueles com mais de um ano de estoma. Foram estatisticamente significativas as escalas: função física, dor, estado geral de saúde, dificuldades financeiras, dispnéia, fadiga, náusea e vômito, constipação e função emocional. A função física teve como variável estatisticamente significante o estado civil, com maior média entre pessoas casadas, assim como a escala dor, porém com maior média entre as pessoas viúvas. A função física entre as pessoas casadas foi maior. No sintoma dor, a presença desta, foi maior entre o grupo de pessoas viúvas e separadas. Na escala estado geral de saúde, foram estatisticamente significativos o sexo e complicações do estoma, com médias superiores entre aqueles do sexo masculino e com presença de complicações. Na escala dificuldades financeiras, a procedência e as complicações do estoma foram estatisticamente significantes. Com maiores médias entre aqueles da área rural e com presença de complicações do estoma. No sintoma dispnéia, a variável estatisticamente significante foi a presença ou não de metástase, com maior média entre aqueles com metástases. Já os sintomas fadiga, náusea e vômitos e constipação, apresentou como única variável estatisticamente significante o tempo de estoma. Na escala função emocional, a variável complicações do estoma foi estatisticamente significante, havendo maior média entre aqueles com presença de complicações do estoma. A escala relações com outras pessoas foi influenciada pelas variáveis: sexo, tempo de estoma e estado de origem, conforme cálculo de Regressão Linear Múltipla. As escalas função emocional, dispnéia, dificuldade financeira e estado geral de saúde tiveram influência das variáveis sexo, estado civil, estado de procedência, metástase, tempo de estoma e complicações. / The objective of this study was to investigate the quality of life of the patient with secondary intestinal estoma to the cancer colo-retal in the city of Aracaju-Se. This is an description-exploratory study, in the quantitative source, using an instrument contends three parts, given partner-demographic and clinical, itens referring to Scale of Quality of Life of Flanagan (EQVF), and EORTC QLQ-C30. The sample consisted of 18 patients taken care of in the Center of Oncologia Dr Oswaldo Leite located in the city of Aracaju - Sergipe in the period of January to December of 2005. The instruments had shown to satisfactory psicometrics properties such as the internal consistency and validity of construct. About the partner-demographic and clinical characteristics, 50% were of the feminine sex, and 50% masculine. The age average was 51,3 years. About the localization of tumor, 38,9% tumor of rectum, followed 33,3% colo-rectum and colon 27,8%. Metastase were presented by 83,3% and 16.7% didn’t present. In relation to the type of stoma, 72,2% had definitive colostomia and 27,8% provisory colostomia. 77,8% of the patients had presented less than 1 year of stoma and 22,2% more than 1 year of stoma. The analysis of quality of life of the sample shows for average EQVF of 52,3 (DP=1,40) for general EQVF. For EORTC QLQ-C30, the been average general of health was of 35,64 (DP=12,39). The scales had been statisticaly significant: social relations with other people, activities and personal development and accomplishment. Patients with less than one year of stoma, present greater social activity, personal development and accomplishment of that those with more than one year of stoma. The scales had been statistically significant: physical function, pain, general state of health, financial difficulties, dispneia, fatigue, nausea and vomit, constipation and emotional function. The physical function had as changeable statistically significant the civil state, with average greater between married people, as well as the scale pain, however with average greater between the people widowers. The physical function between the married people was bigger. In the symptom pain, the presence of this, it was bigger enters the group of people separate widowers and. In the scale general of health, the sex and complications of stoma had been statisticaly significant, with superior averages between those of the masculine sex and with presence of complications. In the scale financial difficulties, the origin and the complications of stoma they had been statisticaly significant. With average greaters between those of the agricultural area and with presence of complications of stoma. In the dispneia symptom, the statisticaly significant variable was the presence or not of metastase, with average greater it enters those with metastases. Already the symptoms fatigue, nausea and vomits and constipation, the stoma time presented as only statisticaly significant variable. In the scale emotional function, the variable complications of stoma was statisticaly significant, having bigger average between those with presence of complications of stoma. The scale Relations with other people was influenced by the variable: sex, time of stoma and state of origin, as calculation of Multiple Linear Regression. The scales emotional function, dispneia, financial difficulty and general state of health had had influence of the variable sex, civil state, state of origin, metastase, time of stoma and complications.

O interesse pelos estudos sobre qualidade de vida tem aumentado em todos os aspectos da sociedade moderna como intenção em avaliar e comparar cuidados médicos, assim como o impacto das intervenções na saúde. A percepção da qualidade de vida difere entre indivíduos e sua caracterização é especialmente difícil na faixa etária pediátrica, na qual cada estágio do desenvolvimento apresenta demandas específicas. Anomalias congênitas do trato urinário são muito frequentes e requerem intervenções imediatas a fim de preservar a função renal. Um dos procedimentos mais frequentemente utilizados é a confecção de estomas. Foi avaliada, num estudo descritivo e transversal, a qualidade de vida de 28 crianças e adolescentes com malformações urinárias, e seus responsáveis, usando o Autoquestionnaire Qualité de Vie Enfanti Imagé e Short-Form 36, respectivamente, e os resultados comparados com 38 crianças saudáveis com idades pareadas e seus responsáveis. Quatro questões foram acrescentadas para o grupo pacientes para avaliar casos específicos atendidos na Unidade de Nefrologia Pediátrica do Instituto da Criança do HCFMUSP. Os resultados sugerem que aspectos sociais, como brincar com irmãos (questão 3), estar na sala de aula (questão 5), durante o recreio escolar (questão 7) e dormir fora de casa (questão 17) são dificuldades encontradas por crianças e adolescentes do grupo dos pacientes, apresentando p significante nos primeiros cálculos. Diante da possibilidade da idade ser um confundidor, que pudesse estar influenciando as percepções negativas, as questões foram recalculadas, obtendo-se, no entanto, apenas a percepção negativa em sala de aula (questão 5) por parte dos pacientes analisados. Os responsáveis apresentaram p significante nos domínios que abordaram a limitação por aspectos físicos, dor e saúde mental, que, quando ajustados para idade e escolaridade, demonstraram que, na percepção dos cuidadores, a escolaridade se confirma como efeito confundidor em todos os quesitos e a idade também, à exceção do domínio limitação física. Entende-se que as malformações urológicas refletem negativamente na qualidade de vida de crianças e adolescentes, bem como em seus responsáveis. O planejamento de intervenções na saúde deve considerar o provável impacto resultante na vida dos pacientes e seus cuidadores, assim como a expectativa do paciente quanto ao resultado das mesmas. Recomenda-se que a repercussão resultante das opções terapêuticas implementadas seja periodicamente avaliada junto ao paciente e seu familiares, com o objetivo de direcionar a adoção de práticas que realmente promovam QV. / The interest in studies about quality of life is increasing in all aspects of modern society as they can be used to evaluate and compare medical care delivery as well as the impact of the health interventions. The perception of quality of life differs among individuals and its characterization is especially difficult in the pediatric age range as each developmental stage presents specific demands. Congenital anomalies of the urinary system are very frequent and may require immediate interventions to preserve the renal function. One of the most frequently needed procedures is the confection of stomas. We have evaluated in a cross sectional study the quality of life of 28 children and adolescents with urinary malformations, and their caregivers, using the Autoquestionnaire Qualité de Vie Enfanti Imagé and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients\' group questionnaire in order to evaluate specific issues related to their urological management. Our results suggested statistically significant results for social aspects, such as playing with siblings (question 3), or at classroom (question 5), or during the school recess (question 7) and sleeping out at a friends (question 17) as difficult challenges to children and adolescents of the patients group . After adjustment for age as a confounding factor only the negative perception at the classroom remained statistically significant. The patients caregivers presented worse SF-36 scores at physical aspects, pain and mental health domains. These results were also adjusted for age and education level as confounding factors. Education proved to be a confounding factor in all domains. Age was also confirmed as confounding factor for all domains with the exception of physical limitation. We suggest that the presence of urological malformations may reflect negatively upon the quality of life of children and adolescents, as well their caregivers. The planning of health interventions in this patient/caregiver group should be adjusted to the resulting impact in their family life routine, and to the patient\'s expectations of improvement. We recommend periodic evaluation of therapeutic interventions with the patient and caregivers, to assure quality of life promotion.

Att få en stomi kan innebära förändringar i kroppsuppfattningen och kan påverka människans livsstil och livskvalitét på olika sätt. Orsaken till att en person får stomi är bl.a. inflammatoriska tarmsjukdomar såsom Crohns sjukdom, ulcerös kolit och kolorektal cancer. Syftet med denna studie var att beskriva upplevelsen av att leva med stomi. En litteraturstudie där 9 kvalitativa och 4 kvantitativa vetenskapliga artiklar har analyserats. Resultatet är baserad på fyra olika kategorier såsom: upplevelsen av en förändrad kroppsbild, sexualitet och intimitet, faktorer som påverkar sociala-och arbetslivet samt avsaknad av kontroll. I resultatet framkom det att många upplever livet med stomi som skrämmande och det för med sig osäkerhet i vardagslivet. Rädslan för läckage, lukt och gas var starkt kopplad till stomin och det ledde till begränsningar i det sociala livet och känslan av att vara annorlunda var inte heller ovanligt. Även den sexuella aktiviteten blev förändrad genom minskad sexlust och upplevelsen av oattraktivitet var vanligt. Det är viktigt att som sjuksköterska minska lidande hos patienten genom respekt och god omvårdnad samt information före- och efter stomioperationen. / Program: Sjuksköterskeutbildning

O interesse pelos estudos sobre qualidade de vida tem aumentado em todos os aspectos da sociedade moderna como intenção em avaliar e comparar cuidados médicos, assim como o impacto das intervenções na saúde. A percepção da qualidade de vida difere entre indivíduos e sua caracterização é especialmente difícil na faixa etária pediátrica, na qual cada estágio do desenvolvimento apresenta demandas específicas. Anomalias congênitas do trato urinário são muito frequentes e requerem intervenções imediatas a fim de preservar a função renal. Um dos procedimentos mais frequentemente utilizados é a confecção de estomas. Foi avaliada, num estudo descritivo e transversal, a qualidade de vida de 28 crianças e adolescentes com malformações urinárias, e seus responsáveis, usando o Autoquestionnaire Qualité de Vie Enfanti Imagé e Short-Form 36, respectivamente, e os resultados comparados com 38 crianças saudáveis com idades pareadas e seus responsáveis. Quatro questões foram acrescentadas para o grupo pacientes para avaliar casos específicos atendidos na Unidade de Nefrologia Pediátrica do Instituto da Criança do HCFMUSP. Os resultados sugerem que aspectos sociais, como brincar com irmãos (questão 3), estar na sala de aula (questão 5), durante o recreio escolar (questão 7) e dormir fora de casa (questão 17) são dificuldades encontradas por crianças e adolescentes do grupo dos pacientes, apresentando p significante nos primeiros cálculos. Diante da possibilidade da idade ser um confundidor, que pudesse estar influenciando as percepções negativas, as questões foram recalculadas, obtendo-se, no entanto, apenas a percepção negativa em sala de aula (questão 5) por parte dos pacientes analisados. Os responsáveis apresentaram p significante nos domínios que abordaram a limitação por aspectos físicos, dor e saúde mental, que, quando ajustados para idade e escolaridade, demonstraram que, na percepção dos cuidadores, a escolaridade se confirma como efeito confundidor em todos os quesitos e a idade também, à exceção do domínio limitação física. Entende-se que as malformações urológicas refletem negativamente na qualidade de vida de crianças e adolescentes, bem como em seus responsáveis. O planejamento de intervenções na saúde deve considerar o provável impacto resultante na vida dos pacientes e seus cuidadores, assim como a expectativa do paciente quanto ao resultado das mesmas. Recomenda-se que a repercussão resultante das opções terapêuticas implementadas seja periodicamente avaliada junto ao paciente e seu familiares, com o objetivo de direcionar a adoção de práticas que realmente promovam QV. / The interest in studies about quality of life is increasing in all aspects of modern society as they can be used to evaluate and compare medical care delivery as well as the impact of the health interventions. The perception of quality of life differs among individuals and its characterization is especially difficult in the pediatric age range as each developmental stage presents specific demands. Congenital anomalies of the urinary system are very frequent and may require immediate interventions to preserve the renal function. One of the most frequently needed procedures is the confection of stomas. We have evaluated in a cross sectional study the quality of life of 28 children and adolescents with urinary malformations, and their caregivers, using the Autoquestionnaire Qualité de Vie Enfanti Imagé and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients\' group questionnaire in order to evaluate specific issues related to their urological management. Our results suggested statistically significant results for social aspects, such as playing with siblings (question 3), or at classroom (question 5), or during the school recess (question 7) and sleeping out at a friends (question 17) as difficult challenges to children and adolescents of the patients group . After adjustment for age as a confounding factor only the negative perception at the classroom remained statistically significant. The patients caregivers presented worse SF-36 scores at physical aspects, pain and mental health domains. These results were also adjusted for age and education level as confounding factors. Education proved to be a confounding factor in all domains. Age was also confirmed as confounding factor for all domains with the exception of physical limitation. We suggest that the presence of urological malformations may reflect negatively upon the quality of life of children and adolescents, as well their caregivers. The planning of health interventions in this patient/caregiver group should be adjusted to the resulting impact in their family life routine, and to the patient\'s expectations of improvement. We recommend periodic evaluation of therapeutic interventions with the patient and caregivers, to assure quality of life promotion.