Use of the Virtual Environment as a Strategy for Disseminating Information during the COVID-19 Pandemic.

Background: The virtual environment has democratized information and research in the health area, especially during the coronavirus disease 2019 (COVID-19) pandemic. Purpose: This study analyzed the boosting strategies of social networks and identified the most accessed posts from a previously developed and validated information portal aimed at people with disabilities. Methods: This quantitative, cross-sectional, descriptive, exploratory study used Google Analytics® to collect data on origins and access numbers; boost data were obtained from the Facebook® and Instagram® networks themselves, after the end of each boost. Conclusions: Greater interest in publications related to the acquisition of rights for persons with disabilities and about COVID-19 was identified. The virtual environment, especially social networks in Brazil, proved to be a useful tool for disseminating information during the COVID-19 pandemic, highlighting the importance of boosting access to health information. In addition, the investment in social networks was relevant due to the increase in the number of followers on the page. Implications for Practice: Social networks can be a valuable means of disseminating research, improving access to information based on scientific evidence in an inclusive way.

Surveying people with spinal cord injuries in Brazil to ascertain research priorities.

Scientists are concerned that the research they conduct accurately portrays the needs of people living with spinal cord injuries (SCI). As such, this study set out to investigate the main problems faced by people with SCI and their expectations for research. This quantitative, exploratory, analytical, and cross-sectional study was carried out online, with a non-probabilistic sample of 618 Brazilian adults with SCI who had registered voluntarily to participate in the research of the Neurorehab group. The virtual questionnaire consisted of 22 questions based on ISCOS Data Sets. The majority (68.9%) of participants were male, with higher education or a post-graduate qualification (49.5%). Most injuries had experienced traumatic injuries (78.5%) and 58.7% were paraplegic. The mean age was 38.04 years (SD = 9.85). The main difficulties faced after SCI were locomotion/accessibility (70.9%), neurogenic bladder (68.8%), neurogenic bowel (48.2%), and sexuality (36.1%). The highest demand was for experimental studies on stem cells (22.5%), rehabilitation (14.2%), and cures (13.9%). Most (84.3%) of those who reported sexuality problems after SCI were men (p = 0.013). The findings obtained empower people with SCI by enabling them to influence the agenda of scientific research based on their expectations and difficulties. This survey will also aid organizations to engage stakeholders to implement a comprehensive SCI management program.

Epidemiological profile of spinal cord injury in Brazil.

OBJECTIVE: To identify and analyze the biosocioeconomic profile associated with the occupation and education of persons with spinal cord injury (SCI) from Brazil. DESIGN: Analytical, quantitative, descriptive, cross-sectional. PARTICIPANTS: Sample composed of 618 Brazilian adults with SCI and access to the internet. SETTING: Community-based, Brazil. METHODS: An online form was developed and publicized on Brazilian social media to voluntarily register for participation in research. Pearson's Chi-squared test was used to analyze the association between categorical variables and the Kruskal Wallis test was used for comparisons and adjusted Odds Ratio with a 95% Confidence Interval. RESULTS: Among the 618 participants, 68.9% were men, with mean age of 38.04 years (SD = 9.85); 58.7% were people with paraplegia and most injuries were traumatic (78.5%), most caused by road traffic accidents (40.8%) and weapons (17.5%). The majority were graduates or post-graduates (49.5%) and received an income of up to US$ 749.58 (55.1%); 70.9% of the participants were beneficiaries of social welfare (63.6%) or unemployed (7.3%). There was a reduction in the employment rate from 91.3% to 15.2% after SCI. An association was found between education and current occupation (P ≥ 0.001). Participants with higher education had higher odds (7.48) to being employed relative to those with elementary education. CONCLUSION: A serious employment situation after SCI was found, with high unemployment and dependence on social welfare. This shows the need for investment in public policies for the rehabilitation, focused on participation, return to the labor market, and ending dependence on social welfare.

Study on the prevalence of neurogenic bladder in Brazilians with traumatic and non-traumatic spinal cord injury.

CONTEXT: Considering that SCI is the main cause of neurogenic bladder, in Brazil, studies and statistical data on the number of people with neurogenic bladder are practically non-existent. To ascertain the prevalence of neurogenic bladder among users of SARAH Network hospitals with traumatic and non-traumatic spinal cord injury. METHODS: Data collection form from electronic medical records to characterize the sample. The variables were related to sociodemographic data such as age, care unit, and date of admission; and to clinical data, such as main diagnosis, neurogenic bladder diagnosis. In the cases of traumatic spinal cord injury, the ASIA Impairment Scale (AIS) was considered. The statistical tests were Mann-Whitney, for two independent samples, and Pearson's Chi-squared, for the categorical variables. FINDINGS: The sample included 954 participants. The prevalence of neurogenic bladder was 94.65%, of which 67% had a traumatic spinal cord injury diagnosis and 69.32% were male. Mean age of the participants was 46.12 years old (SD = 15.78 years). CONCLUSION/CLINICAL RELEVANCE: The prevalence of neurogenic bladder found in the sample was 94.65%. The analysis showed that participants with TSCI are more afflicted by lower urinary tract dysfunction than those with NTSCI. TSCI was more prevalent among males and NTSCI was more prevalent among females. This was a pioneering study on the prevalence of neurogenic bladder in SCI in Brazil. However, further studies will be necessary to corroborate the data found here. The development of a database with national data is indispensable to obtain more reliable results that could provide a basis for public healthcare policies for the prevention and rehabilitation of people with SCI in Brazil.

Labour market participation among rehabilitated individuals with spinal cord injury in Brazil: a cross-sectional study.

STUDY DESIGN: Cross-sectional study. OBJECTIVE: To document the labour market participation rate and investigate the impact of social and economic characteristics on this outcome among individuals with spinal cord injury or disease (SCI/D) who participated in a multidisciplinary rehabilitation programme in Brazil. SETTING: A specialised rehabilitation centre in southern Brazil. METHODS: An interview was performed with former rehabilitation clients with SCI/D. A total of 111 community-dwelling individuals with SCI/D who had been previously rehabilitated in a large regional rehabilitation centre were considered. Employment status and demographic, injury, work, and economic characteristics were self-reported via interview. Descriptive statistical analyses were performed. RESULTS: The labour market participation rate was 21.6% (24 individuals). Five respondents were employed in formal work activities, and the other 19 were involved in informal activities (self-employed). Since the onset of injury, a shorter time was associated with nonparticipation in occupational work. Individuals with a higher level of education were more likely to be working. Household income was higher among the participants who had returned to work than among those who had not returned. CONCLUSION: There is a relatively low labour market participation rate among rehabilitated individuals with SCI/D in southern Brazil. The rehabilitation services should emphasise vocational training, access to education, and employment support for individuals with SCI/D from early onset after the injury. Public policies must be revised to support labour market participation among individuals with SCI/D in Brazil.

Cuidados de enfermagem em programas de reeducação intestinal para pacientes com intestino neurogênico / Nursing care in bowel re-education programs for patients with neurogenic bowel / Cuidados de enfermería en programas de reeducación intestinal para pacientes con intestino neurogénico

RESUMO Objetivo: analisar as evidências disponíveis sobre os cuidados de enfermagem em Programas de Reeducação Intestinal para pacientes com Intestino Neurogênico com constipação. Método: estudo bibliográfico, descritivo, tipo revisão integrativa de artigos publicados entre 2011 e 2021 nas bases de dados LILACS, SciELO, BDENF, SCOPUS e PubMed, utilizando os descritores "Intestino Neurogênico"; "Constipação"; "Enfermagem"; "Neurogenic Bowel"; "Constipation" e "Nursing". A análise foi realizada através da leitura reflexiva e criteriosa acerca da temática do estudo. Resultados: percebeu-se que os cuidados de enfermagem realizados com maior frequência em pacientes com intestino neurogênico incluíam: massagem intestinal, prensa abdominal, treino do vaso, estimulação dígito-anal, irrigação transanal e uso de supositórios, contribuindo positivamente para a instituição de um Programa de Reeducação Intestinal efetivo e seguro. Conclusão: o presente estudo contribui para as ações de cuidados de enfermagem de paciente com IN e para divulgação dos achados sobre os benefícios do Programa de Reeducação Intestinal.

ABSTRACT Objective: to analyze the available evidence on nursing care in Bowel Reeducation Programs for Neurogenic Bowel patients with constipation. Method: bibliographic, descriptive, integrative review type study of articles published between 2011 and 2021 in the LILACS, SciELO, BDENF, SCOPUS, and PubMed databases, using the descriptors "Neurogenic Bowel"; "Constipation"; "Nursing"; "Neurogenic Bowel"; "Constipation" and "Nursing". The analysis was performed through reflective and careful reading about the theme of the study. Results: it was perceived that the most frequently performed nursing care in patients with neurogenic bowel included: bowel massage, abdominal press, vessel training, digit-anal stimulation, transanal irrigation, and use of suppositories, contributing positively to the institution of an effective and safe Bowel Re-education Program. Conclusion: the present study contributes to the nursing care actions of patients with NB and to the dissemination of findings on the benefits of the Bowel Reeducation Program.

RESUMEN Objetivo: analizar las evidencias disponibles sobre los cuidados de enfermería en los Programas de Reeducación Intestinal para pacientes con Intestino Neurogénico y estreñimiento. Método: revisión bibliográfica, descriptiva, integradora de artículos publicados entre 2011 y 2021 en las bases de datos LILACS, SciELO, BDENF, SCOPUS y PubMed, utilizando los descriptores "Neurogenic Bowel"; "Constipation"; "Nursing"; "Neurogenic Bowel"; "Constipation" y "Nursing". El análisis se realizó a través de una lectura reflexiva y cuidadosa sobre el tema del estudio. Resultados: se percibió que los cuidados de enfermería más frecuentemente realizados en pacientes con intestino neurogénico incluían: masaje intestinal, prensa abdominal, entrenamiento de vasos, estimulación digitoanal, irrigación transanal y uso de supositorios, contribuyendo positivamente para la institución de un Programa de Reeducación Intestinal eficaz y seguro. Conclusión: el presente estudio contribuye a las acciones de cuidados de enfermería de los pacientes con IN y a la difusión de los resultados sobre los beneficios del Programa de Reeducación Intestinal.

From Health Literacy to Self-Care: Contributions of the Specialist Nurse in Rehabilitation Nursing.

(1) Background: Initiatives aimed at assessing and intervening in health literacy have the potential to promote adherence to self-care behaviours, which is the main focus of intervention by rehabilitation nurses. Thus, the objectives were to analyse the level of health literacy of working-age citizens and identify priority areas for intervention by rehabilitation nurses. (2) Methods: Quantitative, correlational and cross-sectional study, conducted in a multinational company, with the participation of 161 workers. The data were collected between 14 April and 7 May 2021, using a self-completion questionnaire composed of sociodemographic and clinical characterization and the European Health Literacy Survey, following a favourable opinion from the Ethics Committee and the company's management. (3) Results: Overall, low to moderate literacy scores were predominant. Age and education were significantly associated with literacy scores. Workers with higher levels of health literacy had no diagnosed illnesses, took less medication, reported less sadness, fewer memory changes and less muscle and joint pain. (4) Conclusions: The fact that higher levels of health literacy trigger self-care behaviours and, consequently, fewer health problems reinforces the need for rehabilitation nurses to invest in this area.

Development, validation and international certification of a health portal for people with disabilities.

OBJECTIVES: to develop, validate with specialists and internationally certify a virtual health portal, the D+Informação. METHODS: a quantitative methodological study. Twenty-two expert judges validated the Portal in the health and computer science areas using the Content Validity Index and the Gwet test. International certification followed HONcode principles® to ensure the trust of information. RESULTS: judges of health and computer science validated the portal obtaining a minimum Content Validity Index in more than 75% of the topics, in addition to the evaluation of general agreement, 0.253; content evaluation, 0.193, and interface evaluation, 0.230. All presented the value of Gwet with p ≤ 0,001. CONCLUSIONS: the portal D+Informação was developed, validated, internationally certified and is hosted on this website: https://demaisinformacao.com.br.

Development, validation and international certification of a health portal for people with disabilities / Desarrollo, validación y certificación internacional de un portal de salud para personas con discapacidad / Desenvolvimento, validação e certificação internacional de um portal de saúde para pessoas com deficiência

ABSTRACT Objectives: to develop, validate with specialists and internationally certify a virtual health portal, the D+Informação. Methods: a quantitative methodological study. Twenty-two expert judges validated the Portal in the health and computer science areas using the Content Validity Index and the Gwet test. International certification followed HONcode principles® to ensure the trust of information. Results: judges of health and computer science validated the portal obtaining a minimum Content Validity Index in more than 75% of the topics, in addition to the evaluation of general agreement, 0.253; content evaluation, 0.193, and interface evaluation, 0.230. All presented the value of Gwet with p ≤ 0,001. Conclusions: the portal D+Informação was developed, validated, internationally certified and is hosted on this website: https://demaisinformacao.com.br

RESUMEN Objetivos: desarrollar, validar con especialistas y certificar internacionalmente un portal virtual de salud, el D+Informação. Métodos: estudio metodológico cuantitativo. La validación del Portal fue hecha por 22 jueces especialistas en las áreas de salud y de la informática utilizando el Índice de Validez de Contenido y el test de Gwet. La certificación internacional siguió los principios del HONcode® para garantizar la confianza de las informaciones. Resultados: el Portal fue validado por los jueces de salud y de la informática obteniendo Índice de Validez de Contenido mínimo en más de 75% de los tópicos, además la evaluación de concordancia general, 0,253; evaluación de contenido, 0,193; y evaluación de la interface, 0,230. Todos presentaron el valor de Gwet con p ≤ 0,001. Conclusiones: el Portal D+Informação fue desarrollado, validado, certificado internacionalmente y está hospedado en la siguiente dirección electrónica: https://demaisinformacao.con.br

RESUMO Objetivos: desenvolver, validar com especialistas e certificar internacionalmente um portal virtual de saúde, o D+Informação. Métodos: estudo metodológico quantitativo. A validação do Portal foi feita por 22 juízes especialistas nas áreas da saúde e da informática utilizando o Índice de Validade de Conteúdo e o teste de Gwet. A certificação internacional seguiu os princípios do HONcode® para garantir a confiança das informações. Resultados: o Portal foi validado pelos juízes da saúde e da informática obtendo Índice de Validade de Conteúdo mínimo em mais de 75% dos tópicos, além da avaliação de concordância geral, 0,253; avaliação de conteúdo, 0,193; e avaliação da interface, 0,230. Todos apresentaram o valor de Gwet com p ≤ 0,001. Conclusões: o Portal D+Informação foi desenvolvido, validado, certificado internacionalmente e encontra-se hospedado neste endereço eletrônico: https://demaisinformacao.com.br

Bowel Emptying Methods Used by German Residents Living With Spina Bifida.

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.

O cotidiano do cuidado no domicílio: a realidade de crianças e adolescentes com mielomeningocele / Home care daily: the reality of children and adolescents with myelomeningocele

Introdução: crianças e adolescentes com mielomeningocele atingem a idade adulta devido ao avanço médico, tecnológico e no tratamento, no entanto, ainda enfrentam repercussões que comprometem seu cotidiano e qualidade de vida. Objetivo: analisar o cotidiano de crianças e adolescentes com mielomeningocele. Metodologia: estudo exploratório, com abordagem qualitativa, utilizando-se o referencial teórico de Agnes Heller, na perspectiva do cotidiano. Para a coleta de dados foram entrevistadas 16 mães e 16 crianças e adolescentes com mielomeningocele entre maio e agosto de 2015, residentes em Belo Horizonte/MG e grande região. Resultados: a falta de recursos financeiros, associada às demandas medicamentosas e de insumos para os cuidados, limitou as possibilidades de socialização e participação de crianças e adolescentes. A infraestrutura inadequada de escolas representou uma barreira para a socialização de alguns dos participantes. O cotidiano foi marcado por restrição social, com limitação das atividades de lazer e realização de cuidados domiciliares não habituais. Conclusão: sugere-se a parceria entre diferentes setores da sociedade no intuito de permitir maior participação social a essa população e a construção de políticas públicas direcionadas.

Introduction: children and adolescents with myelomeningocele reach adulthood due to medical, technological and treatment advances, however, they still face repercussions that compromise their daily lives and quality of life.Objective: to analyze the daily life of children and adolescents with myelomeningocele. Methods: an exploratory study with a qualitative approach, using Agnes Heller's theoretical framework, from the perspective of daily life. For data collection, 16 mothers and 16 children and adolescents with myelomeningocele were interviewed between May and August 2015, living in Belo Horizonte / MG and large region. Results: the lack of financial resources, associated with drug demands and care inputs, limited the possibilities of socialization and participation of children and adolescents. The inadequate infrastructure of schools represented a barrier to the socialization of some of the participants. The daily life was marked by social restriction, with limitation of leisure activities and performing unusual home care. Conclusion: it is suggested the partnership between different sectors of society in order to allow greater social participation to this population and the construction of targeted public policies.

Facebook como meio de divulgação científica: aliado ou inimigo? / Facebook as a means of scientific promotion: ally or enemy?

Diferentes estratégias para divulgação de uma nova ferramenta de comunicação e interação em saúde, voltada para pessoas com deficiência, foram aplicadas no Facebook® com o objetivo de identificar quais estratégias de divulgação aplicadas ao Facebook® promoveram mais acessos à rede social D Eficiência e caracterizar seus usuários. Estudo quantitativo, descritivo e longitudinal, com dados extraídos do gerenciador de métricas do Facebook®. A divulgação com busca ativa foi superior a passiva, sendo responsável por 91,4% (n=4.519) dos acessos, via celular (71%) por mulheres (81%). Publicações com hiperlink e imagens foram mais engajadoras. O Facebook® mostrou-se como uma ferramenta eficaz por atingir números expressivos de pessoas, e deve ser considerado na divulgação de novas tecnologias. Para tal, é necessário criar conteúdos atrativos e busca ativa de usuários. Estudos complementares devem continuar a avaliação dessa estratégia, com análise da divulgação orgânica e divulgação com impulsionamento pago.

Different strategies for promoting a new health communication and interaction tool, aimed at persons with disabilities, were applied on Facebook® in order to identify which promotion strategies promoted hits to the D Eficiência social network, and to characterize its users. Quantitative, descriptive and longitudinal study, with data extracted from the Facebook® metrics manager. Active search promotion was higher than passive promotion, accounting for 91.4% (n=4,519) of hits, via cell phone (71%) by women (81%). Hyperlinked publications and images were more engaging. Facebook® proved to be an effective tool for reaching significant numbers of people and should be considered in the promotion of new technologies. For this, it is necessary to create attractive content and conduct an active search for users. Complementary studies should continue to evaluate this strategy, with analysis of organic promotion and paid promotion.

Qualidade de vida e lesão medular traumática: um estudo com uso de data sets internacionais / Quality of life and traumatic spinal cord injury: a study using international data sets

Avaliar a qualidade de vida (QV) de pessoas com lesão medular traumática (LMT) e sua associação com o tempo de LMT. Estudo quantitativo, analítico e transversal. Os dados foram coletados com dois instrumentos validados (questionário biosociodemográfico e Data Set de QV da International Spinal Cord Society). Amostra com 81 participantes, 81,5% do sexo masculino, com média de idade de 36±11,9 anos. A satisfação com a saúde psicológica apresentou maior escore (7,2), apesar disso, 86,4% estavam insatisfeitos ou completamente insatisfeitos com a QV geral. Não houve diferença quando comparado o nível da LMT com satisfação com a vida como um todo (p=0,237). A QV geral foi associada ao tempo de LMT (p=0,005), sugerindo que após cinco anos da LMT, as pessoas tendem a ficar mais satisfeitas com suas vidas. Este estudo mostrou que a maioria dos participantes com LMT apresentam-se insatisfeitos com a qualidade de vida.

The aim of this quantitative, analytical and cross-sectional study was to assess the quality of life (QOL) of people with a traumatic spinal cord injury (SCI) and its association with the length of time of SCI. Data were collected using two validated instruments (a biological and sociodemographic questionnaire and the QOL Data Set from the International Spinal Cord Society). The sample included 81 participants, 81.5% male, with a mean age of 36±11.9 years. Satisfaction with psychological health had a higher score (7.2), despite 86.4% being dissatisfied or completely dissatisfied with overall QOL. There was no difference when comparing the SCI level to satisfaction with overall life (p=0.237). General QOL was associated with the length of time of SCI (p=0.005), suggesting that after five years of SCI, people tend to be more satisfied with their lives. This study showed that most participants with SCI are dissatisfied with their quality of life.

Are patients with a nasally placed feeding tube at risk of potential drug-drug interactions? A multicentre cross-sectional study.

AIMS: The primary aims were to determine the rate of potential drug-drug interactions (pDDIs) in patients with nasally placed feeding tubes (NPFT) and the factors significantly associated with pDDIs. The secondary aim was to assess the change in pDDIs for patients between admission and discharge. MATERIAL AND METHODS: This multicentre study applied a cross-sectional design and was conducted in six Brazilian hospitals, from October 2016 to July 2018. Data from patients with NPFT were collected through electronic forms. All regular medications prescribed were recorded. Medications were classified according to the World Health Organization (WHO) Anatomical Therapeutic Chemical code. Drug-drug interaction screening software was used to screen patients' medications for pDDIs. Negative binomial regression was used to account for the over dispersed nature of the pDDI count. Since the number of pDDIs was closely related to the number of prescribed medications, we modelled the rate of pDDIs with the count of pDDIs as the numerator and the number of prescribed medications as the denominator; six variables were considered for inclusion: time (admission or discharge), patient age, patient gender, age-adjusted Charlson Comorbidity Index (CCI) score, type of prescription (electronic or handwritten) and patient care complexity. To account for correlation within the two time points (admission and discharge) for each patient a generalised estimating equations approach was used to adjust the standard error estimates. To test the change in pDDI rate between admission and discharge a full model of six variables was fitted to generate an adjusted estimate. RESULTS: In this study, 327 patients were included. At least one pDDI was found in more than 91% of patients on admission and discharge and most of these pDDIs were classified as major severity. Three factors were significantly associated with the rate of pDDIs per medication: patient age, patient care complexity and prescription type (handwritten vs electronic). There was no evidence of a difference in pDDI rate between admission and discharge. CONCLUSION: Patients with a NPFT are at high risk of pDDIs. Drug interaction screening tools and computerized clinical decision support systems could be effective risk mitigation strategies for this patient group.

Bladder Self-management in the Transition to Adulthood With Spina Bifida in 3 Countries: A Comparative Study.

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.

Social participation and personal autonomy of individuals with spinal cord injury.

OBJECTIVE: To investigate, based on scientific literature, evidence on social participation and personal autonomy of individuals with spinal cord injury. METHOD: Integrative review of the literature including studies published between January 2006 and September 2016, obtained in the databases PubMed, CINAHL and LILACS. The guiding question was: "What evidence is available in the scientific literature about the social participation and/or personal autonomy of individuals with spinal cord injury?" The data were processed by IRaMuTeQ and analyzed by the Hierarchical Descending Classification, according to the expertise of the researchers. RESULTS: Six selected studies discussed social participation, one discussed personal autonomy and two discussed both. 107 text segments were retained and gave rise to five classes. CONCLUSION: There is little specificity regarding the characteristics of social participation and personal autonomy of individuals with spinal cord injury. The existence of barriers forces them to adopt strategies to participate autonomously.

Social participation and personal autonomy of individuals with spinal cord injury / Participación social y autonomía personal de individuos con lesión medular / Participação social e autonomia pessoal de indivíduos com lesão medular

ABSTRACT Objective: To investigate, based on scientific literature, evidence on social participation and personal autonomy of individuals with spinal cord injury. Method: Integrative review of the literature including studies published between January 2006 and September 2016, obtained in the databases PubMed, CINAHL and LILACS. The guiding question was: "What evidence is available in the scientific literature about the social participation and/or personal autonomy of individuals with spinal cord injury?" The data were processed by IRaMuTeQ and analyzed by the Hierarchical Descending Classification, according to the expertise of the researchers. Results: Six selected studies discussed social participation, one discussed personal autonomy and two discussed both. 107 text segments were retained and gave rise to five classes. Conclusion: There is little specificity regarding the characteristics of social participation and personal autonomy of individuals with spinal cord injury. The existence of barriers forces them to adopt strategies to participate autonomously.

RESUMEN Objetivo: Investigar, a partir de la literatura, evidencias sobre la participación social y la autonomía personal de individuos con lesión medular. Método: Se trata de una revisión integradora que incluye estudios publicados entre enero de 2006 y septiembre de 2016, obtenidos en las bases PubMed, CINAHL y LILACS. Se definió como pregunta directriz: "¿Cuáles son las evidencias disponibles en la literatura científica acerca de la participación social y/o de la autonomía personal de individuos con lesión medular?" Los datos se procesaron con el IRaMuTeQ y se analizaron mediante la Clasificación Jerárquica Descendiente de acuerdo con la experticia de los investigadores del tema. Resultados: Se seleccionaron seis estudios que discurrían sobre la participación social, uno que trataba sobre la autonomía personal y dos, sobre ambas. Se retuvieron 107 segmentos de textos, lo que derivó en la formación de cinco clases. Conclusión Es evidente la falta de datos específicos sobre las características de la participación social y de la autonomía personal de individuos con lesión medular. La existencia de estas barreras los obliga a adoptar tácticas para participar de forma autónoma.

RESUMO Objetivo: Investigar, a partir da literatura, evidências acerca da participação social e autonomia pessoal de indivíduos com lesão medular. Método: Revisão integrativa incluindo estudos publicados entre janeiro de 2006 e setembro de 2016 obtidos nas bases PubMed, CINAHL e LILACS. Definiu-se como questão norteadora: "Quais são as evidências disponibilizadas na literatura científica acerca da participação social e/ou da autonomia pessoal de indivíduos com lesão medular?". Os dados foram processados pelo IRaMuTeQ e analisados pela Classificação Hierárquica Descendente em conformidade com a expertise dos pesquisadores no tema. Resultados: Seis estudos selecionados discorreram sobre a participação social, um sobre a autonomia pessoal e dois sobre ambas. Foram retidos 107 segmentos de texto, resultando na formação de cinco classes. Conclusão: Há pouca especificidade em relação às características da participação social e da autonomia pessoal de indivíduos com lesão medular. A existência de barreiras obriga-os a adotar táticas para participar de forma autônoma.

Desenvolvimento e validação de vídeo educativo para autocateterismo vesical intermitente limpo / Development and validation of an educational video for clean intermittent bladder catheterization

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.

Online health forum as a support for people who perform intermittent vesical catheterization / Fórum virtual de la salud como soporte a personas que realizan cateterismo vesical intermitente / Fórum virtual de saúde como suporte às pessoas que realizam cateterismo vesical intermitente

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.