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One of the most common complications of neurogenic bladder secondary to spinal cord injury (SCI) is urinary incontinence, which is possibly related to bladder-emptying methods and changes in quality of life. This study aimed to identify the occurrence of this complication in adults with SCI and analyze its relationship with bladder-emptying methods, satisfaction, and lifestyle. This is a quantitative, exploratory, and cross-sectional study. The variables were collected using the Bowel and Bladder Treatment Index during a telephone interview with 290 participants from February to November 2021. According to the results, 70% of the participants were male and 74.1% performed clean intermediate catheterization (CIC) as the main bladder-emptying method. Moreover, 55.6% were considered incontinent in the last year. Emptying by normal urination and bladder reflex triggering had a statistically significant relationship with urinary incontinence. A statistical association was observed between all the variables of satisfaction and lifestyle with urinary incontinence. Although CIC reduced urine leakage, a considerable number of participants still presented with frequent urine leakage. Urinary incontinence had a negative impact on satisfaction with the bladder-emptying method, effectiveness of bladder management, quality of life, and personal and social relationships.
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O presente estudo teve o objetivo de explorar a estrutura e a dinâmica de famílias com um filho com deficiência intelectual. Foi utilizada a metodologia qualitativa, a partir do estudo de casos múltiplos, de cinco famílias residentes no Distrito Federal, com análise descritiva e exploratória de entrevistas semiestruturadas para a construção de genogramas, ecomapas, e o ciclo de vital das famílias. Os resultados apresentaram a estrutura e dinâmica familiar através dos dados sociodemográficos, das expectativas atuais e futuras, estratégias de enfrentamento e do ciclo vital. Sugere-se o conhecimento de estratégias familiares adequadas para a transição futura de cuidados no contexto da deficiência intelectual.
This study aimed at exploring the structure and dynamics of families with a child with intellectual disabilities. The qualitative methodology was used, based on the study of multiple cases, of five families living in the Federal District, with descriptive and exploratory analysis of semi-structured interviews for the construction of genograms, ecomapas, and the life cycle of the families. The results presented the family structure and dynamics through sociodemographic data, current and future expectations, coping strategies and life cycle. It is suggested the knowledge of adequate family strategies for the future transition of care in the context of intellectual disability.
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PURPOSE: The purpose of this study was to describe and analyze methods of bowel emptying among Germans living with spina bifida. We also analyzed relationships between age, sex, level of spinal bifida anomaly, and methods of bowel elimination. DESIGN: A quantitative, descriptive study. SUBJECTS AND SETTING: The sample comprised 88 persons (56 women and 32 men) residing anywhere in the Federal Republic of Germany. Their mean age was 17.5 years (SD 13.64 years), range 0 to 55 years. METHODS: Data were collected through an online survey questionnaire developed for the urological follow-up protocol for patients with spina bifida. Parents completed the questionnaire for participants younger than 18 years. RESULTS: Twenty participants (22.7%) reported normal defecation and 68 (77.3%) reported neurogenic bowel dysfunction requiring regular bowel management. Participants requiring bowel management predominately used rectal irrigation (40.9%) and digital rectal stimulation (27.3%) to enhance bowel evacuation. Age emerged as the only factor related to the bowel management techniques. Younger participants (≤20 years) were more likely to use rectal irrigation for bowel evacuation (P = .001, Fisher's exact test), whereas older respondents (≥21 years) were more likely to use digital rectal stimulation (P = .015, Fisher's exact test). Analysis revealed no differences in methods of bowel evacuation based on sex or level of spina bifida anomaly (cervical, thoracic, lumbar, or sacral). CONCLUSIONS: Rectal irrigation was the most common method for bowel evacuation. Participants were less likely to employ potentially effective and more conservative measures for intestinal emptying, such as toilet training/timed evacuation associated with Valsalva maneuvers, abdominal press, abdominal massage, and digital rectal stimulation. Additional comparative studies with more participants and other countries with intestinal emptying methods are needed to better understand the needs of individuals with spina bifida and their families and to improve the health-related quality of life of these people.
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Incontinência Fecal , Intestino Neurogênico , Disrafismo Espinal/complicações , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Defecação , Feminino , Alemanha , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Disrafismo Espinal/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
O objetivo deste manuscrito foi relatar as ações comunitárias de um grupo de moradores, pesquisadores e profissionais da saúde contra os impactos do ruído de lazer (paredões de sons automotivos) no centro histórico de Porto Nacional-TO, Brasil. Nesta localidade foi implementada, como medida compensatória, uma orla de lazer após o enchimento do lago da Usina Luis Eduardo Magalhães em 2001. O trabalho relata o contexto do surgimento desse fenômeno e a emergência das tensões sociais entre os residentes, comerciantes, gestores públicos e transeuntes que gravitam em torno da exposição ao ruído. A partir das ações de mobilização na comunidade, foi desenvolvida uma revisão junto as publicações do Escritório Europeu da Organização Mundial da Saúde que evidenciaram o ruído de lazer como um problema de saúde pública e uma das formas de poluição que mais afeta as pessoas. Dentre os impactos, destacam-se os efeitos biológicos, qualidade do sono, bem-estar e condições médicas. Apesar das evidências encontradas e das medidas de mitigação adotadas pelos gestores, o ruído ainda incomoda os moradores, o que sugere um forte fator cultural em relação a este problema. Conclui-se que as informações deste relato são promissoras para uma área ainda em desenvolvimento no Brasil e que implica a articulação interdisciplinar em torno dos efeitos dos barulhos de lazer na saúde.
The objective of this manuscript was to report the community actions of a group of residents, researchers and health professionals against the impacts of leisure noise (car sound walls) in the historic center of Porto Nacional-TO, Brazil. In this location, as a compensatory measure, a leisure area was implemented after the filling of the Luis Eduardo Magalhães Power Plant lake in 2001. The work relates the context of the emergence of this phenomenon and the emergence of social tensions among residents, shopkeepers, public managers and passers-by who gravitate around exposure to noise. From the mobilization actions in the community, a research was developed with the publications of the European Office of the World Health Organization that highlighted leisure noise as a public health problem and one of the forms of pollution that most affects people. Among the impacts, biological effects, sleep quality, well-being and medical conditions stand out. Despite the evidence found and the mitigation measures adopted by managers, noise still disturbs residents, suggesting a strong cultural factor in relation to this problem. It is concluded that the information in this report is promising for an area still under development in Brazil and that it implies interdisciplinary articulation around the effects of leisure noise on health.
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PURPOSE: The purpose of this study was to evaluate bladder self-management in transition to adult care for patients with spina bifida (SB) in 3 countries with similar clinical practice and different social, cultural, and economic milieu. STUDY DESIGN: Cross-sectional study. SUBJECTS AND SETTING: The sample comprised 90 participants: 27 reside in Brazil, 36 reside in Germany, and 27 reside in the United States. Demographic characteristics of the sample are based on country. The distribution of sex in the Brazilian sample was 18 males and 9 females, the German group had 11 males and 25 females, and the United States group had 8 males and 19 females. The age range of the cumulative sample was 13 to 29 years. The age of the German sample (mean 23.56, standard deviation [SD] 4.60 years) was significantly higher (analysis of variance, F(2, 87) = 13.62, P < .001) than the other 2 groups (Brazil mean 20.56 years, SD 5.24; US mean 19.44 years, SD 4.70). METHODS: Demographic, clinical, and social variable data were collected via an online questionnaire distributed to multiple regions of Germany and a multidisciplinary myelomeningocele clinic at the University of Michigan in the Midwestern United States. In Brazil, participants completed a printed version of the survey. In Germany and the United States, an electronic version of the survey was made available online. German and English versions of the survey, originally developed in Portuguese for persons residing in Brazil, were translated and validated. RESULTS: The majority of participants (94.4%) performed intermittent catheterization (IC), 76.5% performed IC independently, whereas 23.5% required assistance with IC or catheterized with aids (handles, leg spreaders, and penis or labia holder). There were no statistically significant group differences in independent self-catheterization by gender. There were significant national group differences in level of lesion (P = .016), use of shunt (P = .012), and medication for bladder management (P < .001). Among participants 18 years and older, there were significantly higher levels of education in the German and the US samples than in the Brazilian sample (P < .001). CONCLUSIONS: Although there were national group differences in medical characteristics and management of SB, differences in independent self-catheterization were not significant. Findings suggest that support from family/caregivers and health care providers appears to facilitate transition to independent self-care, regardless of national context.
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Transferência de Pacientes/métodos , Autogestão/métodos , Disrafismo Espinal/complicações , Bexiga Urinária/fisiopatologia , Adolescente , Adulto , Análise de Variância , Brasil , Estudos Transversais , Feminino , Alemanha , Humanos , Cateterismo Uretral Intermitente/métodos , Cateterismo Uretral Intermitente/tendências , Masculino , Michigan , Transferência de Pacientes/tendências , Autogestão/tendências , Disrafismo Espinal/psicologia , Estatísticas não Paramétricas , Inquéritos e QuestionáriosRESUMO
Trata-se do desenvolvimento e validação de um vídeo educativo sobre autocateterismo vesical intermitente limpo. Estudo metodológico, realizado em três etapas: pré-produção (elaboração e validação do roteiro e storyboard), produção do vídeo, e pós-produção (validação do vídeo por juízes experts em reabilitação e/ou saúde). O roteiro para produção do vídeo foi desenvolvido e validado por 18 juízes, com 91,1% de concordância. O vídeo, com 10 minutos e cinco segundos, também foi validado e atingiu 97,4% de concordância entre os 17 juízes participantes nos quesitos funcionalidade, usabilidade, eficiência, técnica audiovisual, ambiente e procedimentos. A versão final do vídeo desenvolvido e validado pode ser visualizada no Portal do Núcleo de Pesquisa NEUROREHAB, www.demaisinformacao.com.br. Essa ferramenta pode contribuir para a capacitação de pessoas com bexiga neurogênica a realizar o autocateterismo urinário, bem como profissionais de saúde e estudantes de enfermagem, e apoiar metodologicamente o desenvolvimento de outros vídeos educativos na área da saúde.
The purpose of this study was to develop and validate an educational video on clean intermittent self-catheterization. It was a methodological study, carried out in three stages: pre-production (elaboration and validation of the script and storyboard), video production, and post-production (validation of the video by expert judges working in the field of rehabilitation and/or health). The script for video production was developed and validated by 18 judges, with 91.1% agreement. The video, with a duration time of 10 minutes and five seconds, was also validated and reached 97.4% of agreement among the 17 participating judges regarding functionality, usability, efficiency, audiovisual technique, environment and procedures. The final version of the video developed and validated can be viewed at the NEUROREHAB Research Center Portal, https://demaisinformacao.com.br/ autocatetrismourinario/. This tool can contribute to the training of people with neurogenic bladder, as well as health professionals and nursing students, to perform self-catheterization, and methodologically support the development of other educational videos in the health area.
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Recursos Audiovisuais , Cateterismo Urinário , Bexiga Urinaria Neurogênica , Educação em Saúde , Educação em Saúde/métodosRESUMO
ABSTRACT Objective: to evaluate the use of an online forum for people with myelomeningocele and their families and the profile of the users, based on intermittent catheterization. Method: a quantitative, cross-sectional, descriptive and exploratory study. Data was collected from users of the online forum, based on an online questionnaire available from March 20 to April 20, 2015. Sample consisted of 30 users. Descriptive statistical data analyses and chi-square test were performed. Results: among users, 27% were people with myelomeningocele and 73% were family members. Age, considering the total sample, ranged from 22 to 58 years old. Women represented 67% of the sample. Most users considered the language used in the forum understandable, and also thought the forum had a proper layout and was easy to navigate. It was noted that the mother and the person with myelomeningocele are the main responsible people for intermittent catheterization; 86% use a simple plastic catheter and 14% use a hydrophilic catheter; 81% do not reuse the catheter, 10% use the same catheter for one day and 9% for up to one week. The main place chosen to perform intermittent catheterization was the bed, followed by the toilet and wheelchairs. Conclusion: the use of the online forum was well evaluated by the users. It can be considered a means to obtain information, create a support network and clarify any doubts, empowering users and contributing to adherence to intermittent catheterization, which is one of the treatments for neurogenic bladder.
RESUMEN Objetivo: evaluar el uso de un fórum virtual para personas con mielomeningocele y sus familiares y el perfil de sus usuarios, según la realización del cateterismo vesical intermitente. Método: estudio cuantitativo, transversal, descriptivo y exploratorio. Se realizó la recolección de datos con usuarios del fórum virtual, en base a una encuesta online, disponible desde el 20 de marzo al 20 de abril de 2015. La muestra estuvo compuesta por 30 usuarios. Se realizaron los análisis estadísticos, descriptivos y test chi cuadrado. Resultados: de los usuarios, 27% eran personas con mielomeningocele y 73% familiares. La edad, considerándose toda la muestra, osciló entre los 22 y 58 años. El sexo femenino representó el 67% de la muestra. La mayoría de los usuarios consideró que el lenguaje utilizado en el fórum es comprensible, la imagen es adecuada y tiene una fácil navegación. Se observó que la madre y la propia persona con mielomeningocele son las principales responsables por la realización del cateterismo vesical intermitente; 86% utilizan catéter de plástico simple y 14% el catéter hidrofilico; 81% no reutilizan el catéter, 10% utilizan el mismo catéter durante un día y el 9% incluso hasta una semana. El principal lugar de realización del cateterismo vesical intermitente fue la cama, seguida de la letrina y la silla de ruedas. Conclusión: el uso del fórum virtual fue bien evaluado por los usuarios. Se lo puede considerar un medio para obtener informaciones, formación de red de apoyo y aclarar dudas, empoderando a los usuarios y contribuyendo a la adhesión al cateterismo vesical intermitente, que es uno de los tratamientos para la vejiga neurogénica.
RESUMO Objetivo: avaliar o uso de um fórum virtual para pessoas com mielomeningocele e seus familiares e o perfil dos usuários, de acordo com a realização do cateterismo vesical intermitente. Método: estudo quantitativo, transversal, descritivo e exploratório. A coleta de dados foi realizada com usuários do fórum virtual, com base em um questionário online, disponibilizado de 20 de março a 20 de abril de 2015. A amostra foi composta de 30 usuários. Foram realizadas análises estatísticas descritivas e teste qui-quadrado. Resultados: dos usuários, 27% eram pessoas com mielomeningocele e 73% familiares. A idade, considerando a amostra total, variou de 22 a 58 anos. O sexo feminino representou 67% da amostra. A maioria dos usuários considerou a linguagem utilizada no fórum compreensível, o visual adequado e a navegação fácil. Foi observado que a mãe e a própria pessoa com mielomeningocele são os principais responsáveis pela realização do cateterismo vesical intermitente; 86% utilizam cateter de plástico simples e 14% o cateter hidrofílico; 81% não reutilizam o cateter, 10% utilizam o mesmo cateter durante um dia e 9% por até uma semana. O principal local de realização do cateterismo vesical intermitente foi a cama, seguida pelo vaso sanitário e cadeira de rodas. Conclusão: o uso do fórum virtual foi bem avaliado pelos usuários. Ele pode ser considerado um meio para obtenção de informações, formação de rede de apoio e esclarecimento de dúvidas, empoderando os usuários e contribuindo para a adesão ao cateterismo vesical intermitente, que é um dos tratamentos para a bexiga neurogênica.
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Humanos , Reabilitação , Educação em Saúde , Meningomielocele , Internet , Cateterismo Uretral IntermitenteRESUMO
PURPOSE: The purpose of this study was to describe and compare factors that affect urinary tract infection (UTI) rates in people with spina bifida (SB) and neurogenic bladder dysfunction before and following initiation of intermittent catheterization (IC). DESIGN: A quantitative, descriptive, correlational study. SUBJECTS AND SETTING: The study included people who were from Germany, a high-income nation, and Brazil, a middle-income nation. Brazilian participants were recruited from a public rehabilitation hospital in the state of Minas Gerais. German participants were drawn from different regions of the country. The study sample included 200 participants; participants were either individuals diagnosed with SB and neurogenic bladder dysfunction and using IC, or caregivers of persons using IC for bladder management. METHODS: Data were collected through a survey questionnaire developed for urological follow-up of SB patients. A translated and validated version of the form was used to collect data in Germany. To evaluate annual episodes of UTI, we considered the number of symptomatic UTI before and after IC. RESULTS: Participants from Brazil were significantly younger than German patients (median age 9 vs 20 years, P < .001). Brazilians predominately used assisted catheterization (63.0%), whereas most Germans performed self-catheterization (61.0%). Use of IC greatly reduced the incidence of UTI in both groups (mean 2.8 episodes per year before IC vs mean 1.1 episodes after starting IC, P < .001). Women had a higher number of UTI, both before and after IC, but enjoyed greater reduction in UTI after initiating IC than men. Self-catheterization also promoted a greater reduction of UTI than assisted IC (P = .022). CONCLUSIONS: Intermittent catheterization reduced annual episodes of UTI in both samples despite differences in catheterization technique. Patients practicing and performing self-catheterization achieved a greater reduction than those who relied on assisted IC. Comparative studies among additional countries with varying median income levels are needed to better understand the needs of individuals with SB and their families, and to plan and implement safe nursing interventions.
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Infecções Relacionadas a Cateter/complicações , Cateterismo Uretral Intermitente/efeitos adversos , Infecções Urinárias/etiologia , Adolescente , Adulto , Análise de Variância , Brasil/epidemiologia , Infecções Relacionadas a Cateter/epidemiologia , Criança , Pré-Escolar , Feminino , Alemanha/epidemiologia , Humanos , Lactente , Cateterismo Uretral Intermitente/métodos , Masculino , Meningomielocele/complicações , Meningomielocele/terapia , Pessoa de Meia-Idade , Disrafismo Espinal/complicações , Disrafismo Espinal/terapia , Estatísticas não Paramétricas , Inquéritos e Questionários , Bexiga Urinaria Neurogênica/complicações , Bexiga Urinaria Neurogênica/terapia , Infecções Urinárias/epidemiologiaRESUMO
PURPOSE: Intermittent catheterization (IC) often is essential for individuals with spina bifida/myelomeningocele (SBM) and neurogenic bladder. This study aimed to identify and analyze the factors that influence the use of IC. DESIGN AND METHODS: Descriptive study with convenience sampling. Data were collected using printed (Brazil) and online (Germany) questionnaires, and analyzed using multivariate logistical regression and analysis of variance. The study included 100 Brazilian and 100 German patients, aged 0-55 years, with SBM who utilized IC. FINDINGS: Intermittent catheterization was used by 188 of the 200 patients. Three variables were important for predicting who did or did not use IC: no discontinuation of IC, absence of technical difficulty, and daily frequency of IC. CONCLUSIONS AND CLINICAL RELEVANCE: Findings suggest that difficulties with IC use experienced by spina bifida patients and their family members that predicted full discontinuation tended to be personal variables, rather than demographic or medical characteristics.