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.
Objective: to adapt cross-culturally and validate the contents of the Intermittent Self-Catheterization Questionnaire for Portuguese language. Methods: methodological study involving cross-cultural validation, conducted in five phases: initial translation, translation synthesis, back-translation to the source language, review by committee of judges, pre-test of final version with 30 people with traumatic spinal cord injury who performed auto-catheterization and content validation with 17 judges. Results: changes were made in the Portuguese version of the Intermittent Self-Catheterization Questionnaire regarding the semantic, idiomatic, experimental and conceptual aspects. The pre-test revealed that the items of the translated and adapted version were easy to understand and interpret. The Content Validation Index was 0.92. Conclusion: the translated version of the Intermittent Self-Catheterization Questionnaire was transculturally adapted to Brazilian Portuguese language and validated with a satisfactory content validation index, being considered valid to verify the quality of life of people with neurological conditions that perform urinary auto-catheterization.Objetivo: adaptar transculturalmente e validar o conteúdo do Intermittent Self-Catheterization Questionnaire para língua portuguesa. Métodos: estudo metodológico envolvendo a validação transcultural, conduzido em cinco fases: tradução inicial, síntese da tradução, tradução de volta à língua original, revisão por comitê de juízes, pré-teste da versão final, com 30 pessoas com lesão medular traumática que realizavam autocateterismo, e a validação de conteúdo com 17 juízes. Resultados: foram realizadas alterações na versão em português do Intermittent Self-Catheterization Questionnaire quanto ao aspecto semântico, idiomático, experimental e conceitual. O pré-teste revelou que os itens da versão traduzida e adaptada eram de fácil compreensão e interpretação. O Índice de Validação de Conteúdo foi 0,92. Conclusão: o Intermittent Self-Catheterization Questionnaire, versão traduzida foi adaptado transculturalmente para o português brasileiro e validado com Índice de Validação de Conteúdo satisfatório, sendo considerado válido para verificar a qualidade de vida das pessoas com afecções neurológicas que realizam autocateterismo urinário.
Objective: To review the contents of the nursing diagnosis of Impaired Verbal Communication in patients with Amyotrophic Lateral Sclerosis. Method: For the review of this diagnosis we used the integrative review. The 21 selected articles were submitted to a careful concept analysis for the definition of the diagnostic concept and review of its elements. Results: It is recommended, in addition to a new definition for the diagnosis of Impaired Verbal Communication, the incorporation of twelve Risk Factors, the maintenance of three others and the relocation of a Defining Characteristic for Risk Factor. It is also recommended the incorporation of nine Defining Characteristics and the modification of the nomenclature of the other three that already make up the NANDA-I. Conclusion: The content review process subsidized a clarification of the chosen concept, contributing to a future refinement and improvement of the study diagnosis and its components present in NANDA-I.
Introduction: The rehabilitation of people with traumatic spinal cord injury (SCI) should encourage resilience, which is a complex issue that involves self-esteem, social support, life meaningfulness and life satisfaction in order to prevent suicidal ideation. Objective: To analyze resilience and its relationship with suicidal ideation, self-esteem, social support, life meaningfulness and life satisfaction in people with SCI. Methods: Quantitative, cross-sectional, descriptive, correlational and comparative study carried out with 204 Brazilian adults with SCI. Data were collected with previously validated instruments using an online platform. Results: Among the participants, 74% were male, with a mean age of 36.1 years (SP=9.24), 64.7% were retired or receiving benefits, and with an average time of injury of 8.6 (SP=7, 73). Suicidal ideation (p≤0.001), self-esteem (p≤0.001), social support, life satisfaction (p≤0.001) and life meaningfulness (p≤0.001) were strongly associated with resilience. Discussion: The variables related to mental health were shown to be influenced by resilience, indicating that participants with higher levels of resilience have better results in the assessment of emotional factors. Implications for practice: It is recommended that psychological and social factors be considered in the rehabilitation of people with SCI.
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