Comunidad compasiva para la inclusión social y calidad de vida de las personas con esclerosis múltiple y sus cuidadores familiares / Comunidade compasiva pela inclusao social e qualidade de vida de pessoãs com esclerose multipla e seus familiares cuidadores / Compassionate community for the social inclusion and quality of life of people with multiple sclerosis and their family caregivers

Objetivo: Evaluar cualitativamente la experiencia de pacientescon esclerosis múltiple (PEM) y cuidadores familiares (CFPEM)vinculados al programa de esclerosis múltiple del HospitalUniversitario Nacional de Colombia (PrEM-HUNC), durantela formación y consolidación de una comunidad compasiva(CC), para la inclusión social y promoción de calidad de vida.Materiales y Método: estudio cualitativo interpretativo, conentrevistas a profundidad a nueve colaboradores. Con elmétodo de análisis de espiral de Creswell y Poth, emergieroncuatro categorías y un tema.Resultados: el tema “Un nido comunitario de crecimientoytransformación” señala el proceso de conformación de la CCcomo una experiencia que posibilitó cambios de significadosen torno a la enfermedad, la situación personal y familiar;revela un proceso de descubrimiento y aprendizaje deconformación de diferentes relaciones y roles.Conclusiones: La CC es una opción para construcción deredes de apoyo, fortalecimiento de las capacidades personalesy familiares, una forma para hacer frente a los diferentesimpactos y retos que implica vivir con esclerosis múltiple,se constituye en una alternativa para la promoción de lacalidad de vida y la inclusión social.(AU)

Objective: to qualitatively evaluate the experienceof patients with multiple sclerosis (PEM) and familycaregivers (CFPEM) linked to the multiple sclerosisprogram of the National University Hospital ofColombia (PrEM-HUNC), during the formation andconsolidation of a compassionate community (CC),for social inclusion and promotion of quality of life.Materials and Method: qualitative interpretativestudy, with in-depth interviews to nine collaborators.With Creswell and Poth's spiral analysis method,four categories and one topic emerged. Results: the theme "A Community Nest of Growth andTransformation" points out the process of shaping theCC as an experience that made possible changes in themeanings surrounding the disease and the personaland family situation; reveals a process of discovery andlearning of shaping different relationships and roles.Conclusions: The CC is an option for building supportnetworks, strengthening personal and family capacities,a way to address the different impacts and challengesof living with multiple sclerosis; it is an alternative tothe promotion of quality of life and social inclusion.(AU)

Objetivo: avaliar qualitativamente a experiência depacientes com esclerose múltipla (PEM) e cuidadoresfamiliares (CFPEM) vinculados ao programa de esclerosemúltipla do Hospital Universitário Nacional de Colombia(PrEM-HUNC), durante a formação e consolidação deuma comunidade compassiva (CC), para a inclusãosocial e promoção da qualidade de vida.Materiais e Método: estudo qualitativo interpretativo,com entrevistas em profundidade com nove colaboradores.Com o método em espiral de Creswell e Poth, quatrocategorias e um tema emergiram.Resultados: o tema “Um ninho comunitário de crescimentoe transformação” revela o processo de conformação daCC como uma experiência que possibilitou mudanças designificados em torno da doença, da situação pessoal efamiliar; revela um processo de descoberta e aprendizagemde obter diferentes relacionamentos e papéis.Conclusões: a CC é uma opção para a construção deredes de apoio, fortalecendo as capacidades pessoais efamiliares, uma forma de enfrentar os diversos impactose desafios que o viver com esclerose múltipla implica,sendo uma opção para a promoção da qualidade devida e inclusão social.(AU)

Recomendaciones para la coordinación de los servicios de Neurología y Neurorradiología en la atención a pacientes con esclerosis múltiple / Recommendations for the coordination of Neurology and Neuroradiology Departments in the management of patients with multiple sclerosis

Introducción: El uso de la resonancia magnética (RM) está ampliamente extendido en el diagnóstico y el seguimiento de los pacientes con esclerosis múltiple (EM). La coordinación entre los servicios de Neurología y Neurorradiología es clave para la realización e interpretación de estudios radiológicos de la manera más eficaz posible. Sin embargo, esta coordinación es susceptible de mejoras en una gran parte de los hospitales nacionales. Métodos: Un panel de 17 neurólogos y neurorradiólogos de 8 hospitales españoles, presencialmente y a través de comunicación online, consensuaron una guía de buenas prácticas en la coordinación en EM. La guía se estableció en 4 fases: 1) definición del alcance de la guía y metodología del estudio; 2) revisión bibliográfica sobre buenas prácticas o recomendaciones en el uso de la RM en EM; 3) discusión y búsqueda de consenso entre los expertos; y 4) formalización y validación de los contenidos para elaborar el documento de consenso. Resultados: Se consensuaron un total de 9 recomendaciones dirigidas a la mejora de la coordinación entre los servicios de Neurología y Neurorradiología, que se pueden resumir en: 1) estandarizar las solicitudes de RM, informes y planificación; 2) crear protocolos compartidos para los estudios de RM; 3) establecer comités multidisciplinares y sesiones de coordinación, y 4) generar canales de comunicación formales entre los profesionales de ambos departamentos. Conclusiones: Se espera que las recomendaciones consensuadas sirvan de guía para optimizar la coordinación entre neurólogos y neurorradiólogos y que repercutan en la mejora del diagnóstico y seguimiento de los pacientes con EM.(AU)

Introduction: Magnetic resonance imaging (MRI) is widely used for the diagnosis and follow-up of patients with multiple sclerosis (MS). Coordination between Neurology and Neuroradiology departments is crucial for performing and interpreting radiological studies as efficiently and as accurately as possible. However, improvements can be made in the communication between these departments in many Spanish hospitals. Methods: A panel of 17 neurologists and neuroradiologists from 8 Spanish hospitals held in-person and online meetings to draft a series of good practice guidelines for the coordinated management of MS. The drafting process included 4 phases: 1) establishing the scope of the guidelines and the methodology of the study; 2) literature review on good practices or recommendations on the use of MRI in MS; 3) discussion and consensus between experts; and 4) validation of the contents. Results: The expert panel agreed a total of 9 recommendations for improving coordination between neurology and neuroradiology departments. The recommendations revolve around 4 main pillars: 1) standardising the process for requesting and scheduling MRI studies and reports; 2) designing common protocols for MRI studies; 3) establishing multidisciplinary committees and coordination meetings; and 4) creating formal communication channels between both departments. Conclusions: These consensus recommendations are intended to optimise coordination between neurologists and neuroradiologists, with the ultimate goal of improving the diagnosis and follow-up of patients with MS.(AU)

Iniciativas enfermeras. La importancia de tener acceso a una unidad específica para cualquier enfermedad crónica, y más aún degenerativa e impredecible como lo es la esclerosis múltiple, es primordial, necesaria y de derecho / Nursing initiatives. The importance of having access to a specific unit for any chronic disease, and even more degenerative and unpredictable as multiple sclerosis is, is paramount, necessary and right

Hace más de 10 años que comenzó todo con una llamada de teléfono que lo confirmaba: la esclerosis múltiple llegaba a sus vidas.La noticia las inundó de miedos, pero Noelia Martín Pérez tenía una cosa clara: iba a luchar con su hermana en todo lo que hicierafalta. Después de un encuentro que realiza la Asociación Esclerosis Múltiple España al que fueron invitadas, y con la inyección depositivismo y fuerza que recibieron, se le ocurrió crear Nubes solidarias, un proyecto que compagina con su trabajo como enfermeraen el Hospital Gregorio Marañón (Madrid), que consiste en crear y vender complementos en forma de nube para recaudar fondosy destinarlos a la investigación de la esclerosis múltiple. Poco a poco se ha ido solidarizando más gente, haciendo que esta nubesolidaria llegue cada día a un lugar diferente con su arte y sus pulseras. ¡Hablamos con ella!.(AU)

Increased mental health care use by mothers of children with multiple sclerosis.

OBJECTIVE: We compared the prevalence of physical and mental conditions and rate of health care utilization in mothers of children with multiple sclerosis (MS) (MS-mothers) with that of mothers of children without MS (non-MS-mothers). METHODS: Using population-based administrative data from Ontario, Canada, we identified MS-mothers and non-MS-mothers, matched on maternal age at childbirth, region, and the child's age and sex at the time of MS diagnosis. We compared the prevalence of any physical condition or any mood or anxiety disorder between the cohorts, in the child's MS diagnosis year, and 5 years before and after diagnosis. We compared rates of physician visits before diagnosis, during the diagnosis year, and after the child's diagnosis using multivariable regression models with generalized estimating equations adjusting for maternal age, socioeconomic status, region of residence, and index year. RESULTS: We identified 156 MS-mothers and 624 non-MS-mothers. MS-mothers had a higher prevalence of any physical condition and of any mood or anxiety disorder than non-MS-mothers, before, during, and after their child's diagnosis. On multivariable analysis, MS-mothers did not have higher rates of primary care visits (rate ratio [RR] 1.04; 95% confidence interval [CI] 0.90-1.20), but exhibited increased odds of having any psychiatry visits (odds ratio 1.60; 95% CI 1.10-2.31); the rate of visits did not differ when they did occur (RR 0.66; 95% CI 0.33-1.30). CONCLUSION: Mothers of children with MS use more mental health services before and after their child's MS diagnosis than mothers of children without MS. Pediatric health care providers should consider the mental well-being of mothers and their children with MS.

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well-being.

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well-being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well-being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho-emotional and social-practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well-being was evaluated through the Psychological Well-Being Scales. Analyses substantiated a multi-mediation model including tasks in basic ADL, psycho-emotional and social-practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well-being through lower use of supportive engagement and positive reframing. By contrast, psycho-emotional and social-practical tasks were both negatively and positively related to psychological well-being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well-being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task-specific areas that could be targeted in intervention in order to effectively lighten burden and promote well-being among caregivers.

Moderator Effects in Intervention Studies.

BACKGROUND: Although nursing intervention studies typically focus on testing hypothesized differences between intervention and control groups, moderator variables can reveal for whom or under what circumstances an intervention may be most effective. OBJECTIVES: The aim of the study was to explain and illustrate moderator effects using data from a nursing intervention study to improve cognitive abilities in those with a chronic health condition. METHODS: The sample consisted of 178 individuals with multiple sclerosis participating in an experimental study of a cognitive intervention. General linear models were used for analyses. Interaction terms were created to represent moderator effects on three outcomes: self-reported cognitive abilities, use of memory strategies, and verbal memory performance. RESULTS: The Charlson comorbidity index significantly moderated the intervention effect on self-perceived cognitive abilities. Years of education significantly moderated the intervention effect on use of memory strategies. Scores on a general self-efficacy measure significantly moderated the intervention effect on the Controlled Verbal Learning Test-Second Edition. DISCUSSION: These analyses highlight the key role that moderator effects can play in nursing research. Although random assignment to groups can control potentially biasing effects of extraneous differences among individuals in intervention and control groups, those very differences may suggest fruitful avenues for hypothesis generating research about what works best for whom in intervention studies.

Orem's Self-Care Model with Multiple Sclerosis Patients' Balance and Motor Function.

Orem's self-care model has been introduced as a nursing model to empower participants with chronic diseases. This study aims to investigate the effectiveness of nursing interventions using Orem's self-care model with multiple sclerosis participants' balance and motor function. Sixty-three participants with multiple sclerosis were randomly assigned to intervention and control groups. The nursing intervention using Orem's self-care model was performed for eight sessions of 45-60 minutes in the intervention group. In the intervention group, a significant increase (improvement) was observed in the mean scores of balance before (17.09 ± 1.97) and after the intervention (33.75 ± 6.01). A significant decrease (improvement) was observed in the mean of motor functions before (4.12 ± 0.34) and after the intervention (1.59 ± 0.71) (p = 0.001). However, no significant difference existed in the mean scores of balance (p = 0.10) and motor function in the control group (p = 0.20). The nursing intervention using Orem's self-care model improved balance and motor function of participants with multiple sclerosis.

Prevalência do diagnóstico de enfermagem Mobilidade Física Prejudicada em pessoas com esclerose múltipla / Prevalence of nursing diagnosis Impaired Physical Mobility in people with multiple sclerosis / Prevalencia del diagnóstico de enfermería Movilidad Física Deteriorada en personas con esclerosis múltiple

Objetivo: identificar a prevalência do diagnóstico de enfermagem Mobilidade Física Prejudicada, suas características definidoras e fatores relacionados em pessoas com Esclerose múltipla e verificar a associação entre ambos e suas razões de prevalência. Métodos: estudo transversal com 113 pacientes em um hospital da região Nordeste do Brasil. Para a análise dos dados utilizou-se os testes de qui-quadrado de Pearson e exato de Fisher, sendo calculadas também as razões de prevalência. Resultados: o diagnóstico esteve presente em 89% da amostra e as características e fatores que apresentaram associação foram: alterações na marcha; instabilidade postural; movimentos descoordenados; redução nas habilidades motoras finas e grossas; depressão; força muscular diminuída e prejuízo músculo esquelético. Conclusão: o diagnóstico apresentou-se com elevada frequência na amostra, o que permite identificar as necessidades de intervenções que diz respeito à capacidade funcional do indivíduo, potencializando seu rendimento funcional e pessoal, através do planejamento do cuidado e da assistência qualificada

Objective: to identify the prevalence of the nursing diagnosis Impaired Physical Mobility, its defining characteristics and related factors in people with multiple sclerosis, and to verify the association between both and their prevalence ratios. Methods: cross-sectional study, with 113 patients in a hospital in the Northeast region of Brazil. Pearson's chi-square test and Fisher's exact test were used to perform data analysis, and the prevalence ratios were calculated. Results: the diagnosis was present in 89% of the sample and the characteristics and factors that presented association were: changes in gait; postural instability; uncoordinated movements; reduction in fine and gross motor skills; depression; decreased muscle strength and skeletal muscle injury. Conclusion: the diagnosis was presented with high frequency in the sample, which allows identifying the needs of interventions that relate to the functional capacity of the individual, enhancing their functional and personal income through the planning of care and qualified care.

Objetivo: identificar la prevalencia del diagnóstico de enfermería Movilidad Física Deteriorada, sus características definitorias y factores relacionados en personas con esclerosis múltiple, y verificar la asociación entre ambos y sus razones de prevalencia. Métodos: estudio transversal, con 113 pacientes en un hospital de la región noreste de Brasil. La prueba de chi-cuadrado de Pearson y la prueba exacta de Fisher se usaron para realizar el análisis de datos, y se calcularon las razones de prevalencia. Resultados: el diagnóstico estuvo presente en el 89% de la muestra y las características y factores que presentaron asociación fueron: cambios en la marcha; inestabilidad postural; movimientos descoordinados; reducción de las habilidades motoras fina y gruesa; depresión; disminución de la fuerza muscular y lesión del esqueleto muscular. Conclusión: el diagnóstico se presentó con alta frecuencia en la muestra, lo que permite identificar las necesidades de las intervenciones que se relacionan con la capacidad funcional del individuo, mejorando sus ingresos funcionales y personales a través de la planificación de la atención y la atención calificada.

Mi esclerosis múltiple y yo. Una experiencia de crecimiento personal a través de la escritura / My multiple sclerosis and me: a personal growth experience through writing

En los últimos años, la literatura científica ha mostrado un creciente interés por los factores psicosociales que acompañan e influyen en la enfermedad física, así como por las experiencias de cambio personal que tienen lugar tras el diagnóstico de una enfermedad grave. El objetivo de este trabajo es mostrar una experiencia particular de crecimiento personal en la enfermedad crónica y describir los factores que en este caso han contribuido al proceso. Para ello se ha utilizado el método biográfico, obteniéndose el relato a partir de una entrevista en profundidad. En este relato biográfico se describe, en primera persona, la experiencia de una joven paciente de esclerosis múltiple y cómo la escritura expresiva y el apoyo incondicional de sus seguidores en redes sociales, le ayudaron a poner en marcha un imparable y auténtico proceso de crecimiento post traumático que ha desembocado en la publicación de su primer libro

In recent years, scientific literature have shown a growing interest in the psychosocial factors surrounding physical illness, as well as in personal change experiences that take place after the diagnosis of a serious illness. The aim of this paper is to show a particular experience of personal growth in chronic disease and describe the factors that have contributed to this process. To this end, the biographical method of the qualitative methodology has been used, obtaining the story from an in-depth interview. This story, narrated in first person, describes the experience of a young patient with multiple sclerosis, and how expressive writing and unconditional support of her followers in social networks helped her initiate an unstoppable and genuine process of post traumatic growth that has led to the publication of her first book

Racial Disparities in Medicaid Home and Community-Based Service Utilization among White, Black, and Hispanic Adults with Multiple Sclerosis: Implications of State Policy.

Home- and community-based services (HCBS) provide support to individuals needing assistance with daily activities, like people with multiple sclerosis (MS) who often experience functional impairment. Research notes racial differences in HCBS utilization among people with MS, which may be attributed to state's relative amount of long-term service and support (LTSS) expenditures dedicated to HCBS (HCBS priority). As a first step in untangling this mechanism, we explored how HCBS priority may contribute to racial differences in service utilization. Using Medicaid claims data for a national cohort of dual eligibles with MS, we find state HCBS priority is associated with disparities in utilization-blacks and Hispanics receiving HCBS more often do so in low-priority states compared with whites. Findings indicate a need for additional research focusing on health equity to further examine effects on quality of life and health outcomes of individuals who would benefit from more generous HCBS policies, specifically determining whether minorities in low-HCBS states fare worse than those in high-priority states. Findings from the present study can help policymakers more effectively design HCBS programs for diverse individuals.

Caring for people with multiple sclerosis who use cannabis for symptom control.

Research suggests that a large proportion of people living with multiple sclerosis (PwMS) are using cannabis to self-manage symptoms, or at least believe there are potential benefits in using this drug. Since community nurses are frontline caregivers, they are likely to encounter PwMS who use cannabis within the home setting. The literature base surrounding this topic is largely driven by quantitative research examining the effectiveness of cannabis as a medicine. This review found that qualitative research exploring the experiences of PwMS who use cannabis is lacking worldwide and is completely absent within UK nursing literature. PwMS using cannabis may not feel safe discussing this with health professionals, as they might fear being judged. This literature review discusses how people perceive the effectiveness of cannabis in helping symptoms associated with MS, while also considering the stigma and legal concerns people face. This review may help community nurses inform their practice and enhance person-centred relationships between them and PwMS.

Burden for Parents of Patients With Schizophrenia-A Nationwide Comparative Study of Parents of Offspring With Rheumatoid Arthritis, Multiple Sclerosis, Epilepsy, and Healthy Controls.

BACKGROUND: The study aimed to (1) compare the risk of health care use, adverse health status, and work productivity loss of parents of patients with schizophrenia to parents of patients with multiple sclerosis (MS), rheumatoid arthritis (RA), epilepsy, and healthy controls; and (2) evaluate such outcome measures while considering disease severity of schizophrenia. METHODS: Based on linkage of Swedish registers, at least one parent was included (n = 18215) of patients with schizophrenia (information 2006-2013, n = 10883). Similarly, parental information was linked to patients with MS, RA, epilepsy, and matched healthy controls, comprising 11292, 15516, 34715, and 18408 parents, respectively. Disease severity of schizophrenia was analyzed. Different regression models yielding odds ratios (OR), hazard ratios (HR), or relative risks (RR) with 95% confidence intervals (CI) were run. RESULTS: Psychiatric health care use, mainly due to anxiety and affective disorders, showed a strongly increasing trend for parents of patients with schizophrenia throughout the observation period. During the follow-up, these parents had an up to 2.7 times higher risk of specialized psychiatric health care and receipt of social welfare benefits than other parents. Parents of the moderately severely ill patients with schizophrenia had higher risk estimates for psychiatric health care (RR: 1.12; 95% CI: 1.07-1.17) compared with parents of least severely ill patients. CONCLUSIONS: Parents of patients with schizophrenia have a considerably higher risk of psychiatric health care and social welfare benefit receipt than other parents. Psychiatric health care use worsens over time and with increasing disease severity of the offspring.

Caregiver burden and family functioning in different neurological diseases.

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer's Disease and other dementia (AD), Parkinson's Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.

Our disease: a qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis.

PURPOSE: To provide a unique and conceptually comprehensive account of the lived experiences of caregiving spouses/partners of people with multiple sclerosis, which can be used to better enable health professionals to provide appropriate support services. METHOD: A systematic review of qualitative studies reporting the experiences of caregiving spouses/partners was conducted. Relevant articles were identified and analysed using a meta-ethnographic synthesis. RESULTS: Twenty studies met eligibility criteria, of which 18 were included in the final meta-synthesis. Six major concepts were identified: Acceptance and Appreciation, Commitment, Becoming the Carer, Living with Loss, Shifting Sands and Setbacks with Services. A model of carer experience is presented as a line of argument to synthesise the findings. Suggestions are made regarding the types of supportive interventions that might be effective for spousal carers. CONCLUSION: The findings increase our understanding about the experiences of partners caring for people with multiple sclerosis. Spousal carers can adapt to the challenges associated with change and loss, and have the potential to develop appreciation, acceptance and hope. Services need to be sensitive to the fluctuating demands placed upon carers and be flexible in their support.

Immunosuppressive/Autoimmune Disorders.

Autoimmune disorders are a category of diseases in which the immune system attacks healthy cells as a result of a dysfunction of the acquired immune system. Clinical presentation and diagnosis are disease specific and often correspond with the degree of inflammation, as well as the systems involved. Treatment varies based on the specific disease, its stage of presentation, and patient symptoms. The primary goal of treatment is to decrease inflammation, minimize symptoms, and lessen the potential for relapse. Graves disease, Hashimoto thyroiditis, rheumatoid arthritis, Crohn disease, ulcerative colitis, systemic lupus erythematosus, and multiple sclerosis are discussed in this article.

Significando a vivência das pessoas com doença autoimune do sitema nervoso, na perspectiva das demandas de cuidado: contribuições para a enfermagem e para a saúde integral / Meaning the experience of people with autoimmune disease of the nervous system, from the perspective of care demands: contributions to nursing and to integral health

A presente dissertação de mestrado inserida no Núcleo de Fundamentos do Cuidado de Enfermagem (NUCLEARTE) da EEAN tem como objeto o significado da vivência da pessoa com afecção autoimune do sistema nervoso na relação com as demandas de cuidado. Para tanto, foram traçados os seguintes objetivos: objetivo geral: Compreender a vivência da pessoa com afecção autoimune do sistema nervoso na perspectiva das demandas de cuidado; e objetivos específicos: Conhecer a vivência da pessoa com afecção autoimune do sistema nervoso, Relacionar a vivência com as demandas de cuidado e Propor uma teoria substantiva que congregue as demandas de cuidado à saúde integral. O referencial teórico do estudo é o Interacionismo Simbólico, haja vista a importância do significado para o fenômeno em investigação. Foi utilizada a abordagem metodológica qualitativa, guiada pelos conceitos da Teoria Fundamentada nos Dados (TFD). O cenário de estudo compreendeu as unidades de atenção básica à saúde, incluindo as Estratégias de Saúde da Família do município de Macaé ­ RJ. O grupo amostral foi composto de doze mulheres com diagnóstico confirmado de doença autoimune do sistema nervoso, a saber esclerose múltipla e miastenia gravis, tendo sido utilizado o critério de saturação teórica. A coleta dos dados se deu mediante entrevista semi-estruturada em profundidade a fim de proporcionar uma imersão no universo da pessoa entrevistada, captando aspectos verbais e não-verbais, dentre outros. Os depoimentos coletados foram analisados de acordo com os procedimentos próprios da TFD: codificação aberta, codificação axial e codificação seletiva para posterior construção da categoria central, cerne do estudo. A partir da conjunção dos fenômenos relacionados ao objeto de estudo: condições causais, condições contextuais, condições interventoras, estratégias de ação-interação e consequências, foi possível identificar o fenômeno central: (RE) SIGNIFICANDO A VIDA A PARTIR DAS DEMANDAS DE CUIDADO: A VIVÊNCIA DA DOENÇA AUTOIMUNE DO SISTEMA NERVOSO REVELA UM NOVO SER.(AU)

Introduction of a palliative approach in the care trajectory among people living with advanced MS: perceptions of home-based health professionals.

BACKGROUND: Even with the desire of home-based health professionals to provide supportive care, the palliative needs of people living with multiple sclerosis (MS) remain unmet. AIM: To describe the perceptions of home-based health professionals concerning the introduction of a palliative care approach in the care trajectory of people living with advanced MS. METHOD: Based on an exploratory qualitative design, focus groups and individual interviews were conducted with nurses, occupational therapists and social workers (n=13 professionals). RESULTS: A palliative care approach was described as a possibility for opening the discussion between the patient and their caregivers about their needs and desires at the end of life. The approach required professionals to be supportive and to adapt their interventions to people living with MS. However, professionals reported difficulties in introducing a palliative care approach. CONCLUSION: Health professionals reported that they feel a palliative care approach for people living with MS is mandatory; however, they do not feel comfortable integrating it systematically into their care.

Evaluating the Utility of a Structured Clinical Protocol for Reducing the Impact of Behavioural and Psychological Symptoms of Dementia in Progressive Neurological Diseases: A Pilot Study.

OBJECTIVES: Behavioural and psychological symptoms of dementia (BPSD) cause significant distress to both aged care residents and staff. Despite the high prevalence of BPSD in progressive neurological diseases (PNDs) such as multiple sclerosis, Huntington's disease, and Parkinson's disease, the utility of a structured clinical protocol for reducing BPSD has not been systematically evaluated in PND populations. METHOD: Staff (n = 51) and individuals with a diagnosis of PND (n = 13) were recruited into the study, which aimed to evaluate the efficacy of a PND-specific structured clinical protocol for reducing the impact of BPSD in residential aged care (RAC) and specialist disability accommodation (SDA) facilities. Staff were trained in the clinical protocol through face-to-face workshops, which were followed by 9 weeks of intensive clinical supervision to a subset of staff ("behaviour champions"). Staff and resident outcome measures were administered preintervention and immediately following the intervention. The primary outcome was frequency and severity of BPSD, measured using the Neuropsychiatric Inventory-Nursing Home Version (NPI-NH). The secondary outcome was staff coping assessed using the Strain in Dementia Care Scale (SDCS). RESULTS: In SDA, significant reductions in staff ratings of job-related stress were observed alongside a statistically significant decrease in BPSD from T1 to T2. In RAC, there was no significant time effect for BPSD or staff coping; however, a medium effect size was observed for staff job stress. CONCLUSIONS: Staff training and clinical support in the use of a structured clinical protocol for managing BPSD were linked to reductions in staff job stress, which may in turn increase staff capacity to identify indicators of resident distress and respond accordingly. Site variation in outcomes may relate to organisational and workforce-level barriers that may be unique to the RAC context and should be systematically addressed in future RCT studies of larger PND samples.

Nurse-led immunotreatment DEcision Coaching In people with Multiple Sclerosis (DECIMS) - Feasibility testing, pilot randomised controlled trial and mixed methods process evaluation.

BACKGROUND: Treatment decision-making is complex for people with multiple sclerosis. Profound information on available options is virtually not possible in regular neurologist encounters. The "nurse decision coach model" was developed to redistribute health professionals' tasks in supporting immunotreatment decision-making following the principles of informed shared decision-making. OBJECTIVES: To test the feasibility of a decision coaching programme and recruitment strategies to inform the main trial. DESIGN: Feasibility testing and parallel pilot randomised controlled trial, accompanied by a mixed methods process evaluation. SETTING: Two German multiple sclerosis university centres. PARTICIPANTS PILOT TRIAL: People with suspected or relapsing-remitting multiple sclerosis facing immunotreatment decisions on first line drugs were recruited. Randomisation to the intervention (n = 38) or control group (n = 35) was performed on a daily basis. Quantitative and qualitative process data were collected from people with multiple sclerosis, nurses and physicians. METHODS: We report on the development and piloting of the decision coaching programme. It comprises a training course for multiple sclerosis nurses and the coaching intervention. The intervention consists of up to three structured nurse-led decision coaching sessions, access to an evidence-based online information platform (DECIMS-Wiki) and a final physician consultation. After feasibility testing, a pilot randomised controlled trial was performed. People with multiple sclerosis were randomised to the intervention or control group. The latter had also access to the DECIMS-Wiki, but received otherwise care as usual. Nurses were not blinded to group assignment, while people with multiple sclerosis and physicians were. The primary outcome was 'informed choice' after six months including the sub-dimensions' risk knowledge (after 14 days), attitude concerning immunotreatment (after physician consultation), and treatment uptake (after six months). Quantitative process evaluation data were collected via questionnaires. Qualitative interviews were performed with all nurses and a convenience sample of nine people with multiple sclerosis. RESULTS: 116 people with multiple sclerosis fulfilled the inclusion criteria and 73 (63%) were included. Groups were comparable at baseline. Data of 51 people with multiple sclerosis (70%) were available for the primary endpoint. In the intervention group 15 of 31 (48%) people with multiple sclerosis achieved an informed choice after six months and 6 of 20 (30%) in the control group. Process evaluation data illustrated a positive response towards the coaching programme as well as good acceptance. CONCLUSIONS: The pilot-phase showed promising results concerning acceptability and feasibility of the intervention, which was well perceived by people with multiple sclerosis, most nurses and physicians. Delegating parts of the immunotreatment decision-making process to trained nurses has the potential to increase informed choice and participation as well as effectiveness of patient-physician consultations.