Spirituality as Strategies for Coping With Tropical Spastic Paraparesis: Results of Focus Group.

In the logic of integrality in health, one of the aspects less addressed by assistance services is the question of spirituality. This study utilized qualitative analysis from focus groups to identify whether spirituality can contribute to coping with problems arising from the HTLV-1 myelopathy associated or tropical spastic paraparesis (HAM/TSP). The testimonies were recorded and then transcribed. The information was then systematized by the analysis of thematic-categorical content. When giving voice to people who suffer from HAM/TSP, there is clear evidence that spirituality, understood broadly and not restricted to institutionalized religious practices, is expressed in narratives of feeling for others and trust in God. Through spiritual solutions, people with HAM/TSP find the strength to face their disability and pain.

Impacto da acessibilidade na adesão ao tratamento fisioterapêutico de pessoas convivendo com paraparesia espástica tropical: estudo qualitativo / Impact of accessibility on adherence to physiotherapeutic treatment of people living with tropical spastic paraparesy: qualitative study

INTRODUÇÃO: A Paraparesia Espástica Tropical / Mielopatia Associada ao HTLV-1 (HAM/TSP) apresenta alterações crônico-degenerativas que comprometem os indivíduos nas atividades diárias, principalmente aquelas ligadas à locomoção. A acessibilidade é um parâmetro importante para a adesão à fisioterapia nestas pessoas. OBJETIVO: investigar o impacto da acessibilidade na adesão ao tratamento fisioterapêutico em pessoas infectadas pelo HTLV-1, com HAM/TSP. MÉTODO: estudo com abordagem qualitativa, com 38 participantes, maiores de 18 anos, com diagnóstico confirmado de HAM/TSP. Excluídos aqueles com dificuldade de compreensão dos questionamentos ou de comunicação. Para a coleta das informações, foram realizados 11 grupos focais e 12 entrevistas semiestruturadas. Os depoimentos foram gravados e depois transcritos. As informações foram sistematizadas pela análise do conteúdo temática-Categorial. RESULTADOS: Após as análises dos grupos focais e entrevistas, emergiram as seguintes categorias: dificuldade de acesso, dependência externa (climática/de acompanhante), dependência financeira e dependência de consultas médicas. CONCLUSÃO: A precariedade da infraestrutura e acessibilidade na cidade de Salvador, além da condição econômica, mudanças climáticas e dificuldades ao acesso do Sistema Único de Saúde, impactam diretamente na adesão ao tratamento fisioterapêutico. O não comparecimento à fisioterapia pode afetar a evolução do tratamento e a saúde dessa população.

| INTRODUCTION: Tropical Spastic Paraparesis / Myelopathy Associated with HTLV-1 (HAM / TSP) presents chronic degenerative changes that compromise individuals in their daily activities, especially those related to locomotion. Accessibility is an important means of adhering to physical therapy for all these people. OBJECTIVE: To investigate the impact of accessibility on adherence to physical therapy treatment in people infected with HTLV-1 with HAM / TSP. METHOD: a study with a qualitative approach, with 38 participants, over 18 years old, with a confirmed diagnosis of HAM / TSP. Those with difficulty understanding the questionnaires or communicating were excluded. For the collection of information, 11 focus groups and 12 semi-structured changes were performed. The researcher herself recorded and then transcribed the statements. The analysis of thematic-Categorial content systematized the information. RESULTS: After analyzing the focus groups and related, the following categories emerged: access difficulty, external dependence (climatic/accompanying), financial dependence, and dependence on medical appointments. CONCLUSION: The precariousness of infrastructure and accessibility in the city of Salvador, in addition to the economic condition, climate change, and difficulties in accessing the Unified Health System, directly impact adherence to physical therapy treatment. Failure to attend physical therapy can affect the evolution of treatment and the health of this population.

Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

BACKGROUND: Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world's population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. There is limited knowledge of the feelings, experiences, and coping mechanisms associated with this neglected disease. The objective of the present qualitative study was to investigate the signs, meanings, and practices of people with HAM/TSP, through narratives obtained from focus groups and individual semi-structured face-to-face interviews. RESULTS: Thirty-eight individuals diagnosed with HAM/TSP participated in the study. The following categories and subcategories emerged from the participants: Signs-physical signs, symptoms, and discovery of the disease; Meanings-reaction to diagnosis and knowledge of disease, fears, and expectations; Practices-daily life, leisure, religious, and treatment activities. CONCLUSIONS: People with HAM/TSP suffer from symptoms that limit their social participation, and they are affected by complex and multidimensional feelings. This awareness can contribute to the implementation of public policies-focused on the real perspective of these patients-that provide more directed, empathic, and harmonious care for these individuals.

Programas de exercícios domiciliares para incapacidades da atividade de caminhar causadas por distúrbios neurológicos: Revisão sistemática com metanálise / Home-based exercise programs for disabilities of walking activity caused by neurological disorders: Systematic Review with Meta-Analysis

INTRODUÇÃO: Na medida em que a expectativa de vida aumenta, também são necessárias soluções para melhorar a independência funcional em condições cronicamente alteradas, comuns nas disfunções neurológicas. OBJETIVO: Avaliar o efeito de programas de exercícios domiciliares (PED) sobre prejuízos na atividade de caminhar devido a acidente vascular cerebral (AVC), doença de Parkinson (DP), esclerose múltipla (EM) e mielopatia associada ao HTLV-1 ou paraparesia espástica tropical (HAM/TSP). MÉTODOS: As fontes de dados incluíram PubMed, SciELO, Pedro e Cochrane Library e artigos disponíveis em inglês, português, espanhol, alemão ou francês. Nenhuma restrição de tempo foi aplicada e a seleção foi feita por dois pesquisadores independentes em três etapas. Ensaios clínicos com intervenções dos programas PED para adultos com dificuldades de marcha ou equilíbrio decorrentes das condições neurológicas acima foram incluídos. As variáveis foram velocidade ou distância da marcha, força, equilíbrio, mobilidade, funcionalidade e independência funcional. A qualidade metodológica foi avaliada com a escala PEDro, e uma estratégia PICOS orientou extração de dados. Diferenças das médias ponderadas (DMP), intervalos de confiança de 95% (IC) e heterogeneidade foram avaliadas pelo teste I2 com o programa RevMan 5.3. A GRADE foi aplicada na avaliação da qualidade da evidência. RESULTADOS: O PED foi eficaz na melhora do equilíbrio (DMP 2,8;IC 1,5; 4,1) e da capacidade cardiorrespiratória (DMP 29,3m; IC 8,3; 50,2) para pessoas com AVC. Para pessoas com EM, o PED levou a uma melhora no perfil fisiológico (DMP -1,3; IC -0,5; 2,0) e mobilidade (DMP -3,3; IC -5,1; -1,4). CONCLUSÕES: O PED é eficaz na melhora da atividade de caminhada, desempenho e mobilidade funcional das deficiências neurológicas. Sugerimos a aplicação do PED na saúde pública e o uso de escalas funcionais para comparar a mesma incapacidade em diferentes distúrbios neurológicos.

INTRODUCTION: As increase life expectancy, the searches for conducts to improve functional independence in chronically altered conditions as is common in the neurological dysfunction. OBJECTIVES: To evaluate the effect of therapeutic home based exercise programs (HBE) on impairment of walking activity due to stroke, Parkinson's disease (PD), multiple sclerosis and HTLV-1 associated myelopathy or tropical spastic paraparesis (HAM/TSP). METHODS: data sources PubMed, Scielo, Pedro, Cochrane Library; available in English, Portuguese, Spanish, German or French languages; no time restrictions; selection made by two independent researchers, in three stages; included Clinical Trials with interventions of HBE Programs for adults with gait or balance disabilities arising from the above neurological conditions; gait speed or distance, strength, balance, mobility, functionality and functional independence were the variables; methodological quality with PEDro scale; PICOS strategy guided the extraction date. Weighted mean differences (WMD), 95% confidence intervals (CI), and the heterogeneity assessed by the I2 test with RevMan 5.3 program. RESULTS: In balance (WMD 2.8; CI 1.5; 4.1) and in cardiorespiratory capacity (WMD 29.3m; IC 8.3; 50.2) for people with stroke are effectiveness. For people with Multiple Scleroses there is improvement in physiological profile (WMD -1.3; CI -0.5; 2.0) and mobility (WMD -3.3; CI -5.1; -1,4). CONCLUSIONS: The HBE is effective on walking activity, improve performance and functional mobility in neurological impairments. Is suggested HBE on public health to includ elements for management of disabilities on the programs and the use of functional scales such as WHODAS to compare the same disability in different neurological disorders.