published_or_final_version / Community Medicine / Master / Master of Public Health

The needs of patients who are nursed on the ICU are becoming more widely recognised and services are beginning to reflect this. However there is little research into how patients who have suffered from a severe and progressive muscular paralysis called Guillain-Barré Syndrome (GBS) experience the disease and subsequent hospitalisation. The purpose of this study was to explore how these patients experience the different aspects of the illness, including an extended period of paralysis and treatment on an ICU. This is intended to expand upon the limited research in this area and identify how the findings can inform clinical practice and future studies. Method: A systematic literature search identified research in relation to the experiences of individuals who had GBS which was utilised to form the basis of the understanding for this study. Very little systematic research has looked at individuals‟ experiences of Guillain-Barré Syndrome whilst ill and their subsequent recovery. A mixed methods study was carried out with the aim of adding to this research. Interpretative Phenomenological Analysis was selected as the method of analysis for Study 1, which involved interviews with seven participants who had experienced GBS severe enough to need treatment on an ICU. This then enabled quantitative questionnaires to be disseminated which asked about individuals‟ levels of anxiety, depression and Post Traumatic Stress symptomatology both retrospectively and following recovery in Study 2. Results: Study1 found that participants experienced GBS as either a slow and frustrating, or as a rapid and scary onset. The main themes that were developed included: the paralysis being viewed as multiple losses, frustration, difficulties associated with communication loss, vulnerability and frightening hallucinations. Study 2 utilised non-parametric analyses of the data and found that participants experienced high levels of anxiety and depression at the onset of GBS and that some continued to experience anxiety, depression and post traumatic symptoms after recovery from GBS. Generally the profile suggests predominantly anxiety problems during the acute onset phase and then predominantly depression at the time of follow-up. Aspects of post traumatic stress were positively correlated with duration of mechanical ventilation which in turn was related to duration of paralysis. This challenged the hypothesis that GBS patients habituate to the experience of paralysis. Conclusion: For some individuals, GBS was experienced as a frightening event, but one that they could draw positive things from. However, for others, GBS was experienced as a traumatic event and some of these people continued to exhibit signs of psychological distress even after recovery. It remains important for staff to feel able to speak about distressing situations with their patients and to signpost them to other psychological services if appropriate.

M.Cur. / The purpose of this study is to explore and describe the experiences of patients with Guillain-Barré syndrome whilst being nursed in intensive care units, in order to set guidelines for nursing. The researcher made use of the phenomenological approach within the paradigm of qualitative research. The target population consisted of 70 patients of which seven complied with the selection criteria: In-depth interviews, which were taped, were conducted with the patients. Validity and reliability were ensured by using measures as stated by Woods and Catanzaro (1988). Data-analysis was executed by means of Giorgi's method (Omery,1983) and after clearance with an external decoder, it was categorized according to the patients' internal and external environment. The Nursing Theory for the Wholeperson had been used to this purpose. The conclusions of this study indicate that patients with Guillain-Barré syndrome in intensive care units experience deprivation of sleep, pain and fear. Limited communication and loss of autonomy create frustration. Patients become lonely and bored and have a need for constant support from their family and others. Consequent upon the conclusions the researcher developed nine guidelines for the nursing of patients with Guillain-Barré syndrome. These guidelines are in support of the functional approach of the researcher and may be considered an attempt to provide research findings that are applicable to the practice of nursing.

A Síndrome de Guillain-Barré (SGB) é uma neuropatia periférica inflamatória aguda que tem sido definida pelo achado ou história de tetraparesia flácida arreflexa ascendente. Apresentações atípicas podem ser mais frequentes do que tem sido referido na literatura, particularmente na faixa etária infantil. Objetivo: Avaliar dados epidemiológicos e a prevalência de assimetria no exame neurológico em crianças com SGB. Métodos: Foram revisados 40 prontuários de crianças de 0 a 15 anos de idade com o diagnóstico de SGB, atendidas entre janeiro de 2000 e agosto de 2016. Avaliouse a presença de assimetrias no exame neurológico na admissão hospitalar, os desfechos clínicos e as características demográficas e clinico-laboratoriais. Resultados: Dois pacientes apresentaram assimetria no exame neurológico na admissão hospitalar e três pacientes admitidos com tetraparesia simétrica apresentaram um quadro motor assimétrico antes da internação. Uma criança evoluiu para assimetria após ter sido admitida com quadro simétrico. Outros oito casos tinham fraqueza segmentar. A presença de assimetria motora ou fraqueza segmentar se correlacionou com a progressão estática dos sintomas (p=0,004) e observou-se uma tendência desses pacientes serem mais jovens, mas essa diferença não foi significativa (p=0,08). Onze pacientes apresentavam reflexos miotáticos preservados e um paciente exibia hiperreflexia na admissão hospitalar. A maioria dos pacientes foi admitida sem conseguir deambular e, na alta, a maioria deambulava com ou sem apoio. Cinco crianças necessitaram de suporte ventilatório e nenhuma foi a óbito. Conclusão: Uma proporção significativa dos pacientes apresentava quadro motor assimétrico ou segmentar e reflexos miotáticos preservados. Os resultados obtidos delineiam aspectos clínicos atípicos na SGB em crianças e podem ajudar na definição diagnóstica e instituição de tratamento precoce. / Guillain-Barré syndrome (GBS) is an acute, inflammatory, peripheral neuropathy that has been being defined as an ascending flaccid tetraparesis. Atypical presentations can be frequent, particularly in children, leading to greater challenges in the diagnosis. Objectives: To analyze the epidemiological data and the prevalence of motor asymmetries in the neurological examination of children with GBS. Methods: A total of 40 medical records were analyzed, of children aged 0 to 15 years old diagnosed with GBS, admitted from January 2000 to August 2016. We evaluated the presence of motor asymmetries at the hospital admission, the clinical outcomes and the demographic and clinic-laboratorial characteristics. Results: Two patients had motor asymmetries at hospital admission and three patients admitted with symmetric tetraparesis had an initial motor asymmetry before admission. One patient progressed to asymmetric tetraparesis after being initially admitted with symmetric weakness. Eight other cases had segmental weakness at admission. Motor asymmetry and segmental weakness correlated with a static progression of symptoms (p=0.004) and these patients tended to be younger, but this difference was not significant (p=0.08). Eleven patients had preserved deep tendon reflexes and one exhibited hyperreflexia at the hospital admission. Most patients were admitted on wheel-chair or bedridden, and at discharge the majority could walk with or without help. Five children required mechanical ventilation and no patient died. Conclusion: A significant proportion of patients had asymmetric or segmental weakness and preserved deep tendon reflexes. Those results show that the so-called atypical clinical findings in children with GBS are not uncommon, and needs to be kept in mind to allow an earlier diagnosis and treatment.

A Síndrome de Guillain-Barré (SGB) é uma neuropatia periférica inflamatória aguda que tem sido definida pelo achado ou história de tetraparesia flácida arreflexa ascendente. Apresentações atípicas podem ser mais frequentes do que tem sido referido na literatura, particularmente na faixa etária infantil. Objetivo: Avaliar dados epidemiológicos e a prevalência de assimetria no exame neurológico em crianças com SGB. Métodos: Foram revisados 40 prontuários de crianças de 0 a 15 anos de idade com o diagnóstico de SGB, atendidas entre janeiro de 2000 e agosto de 2016. Avaliouse a presença de assimetrias no exame neurológico na admissão hospitalar, os desfechos clínicos e as características demográficas e clinico-laboratoriais. Resultados: Dois pacientes apresentaram assimetria no exame neurológico na admissão hospitalar e três pacientes admitidos com tetraparesia simétrica apresentaram um quadro motor assimétrico antes da internação. Uma criança evoluiu para assimetria após ter sido admitida com quadro simétrico. Outros oito casos tinham fraqueza segmentar. A presença de assimetria motora ou fraqueza segmentar se correlacionou com a progressão estática dos sintomas (p=0,004) e observou-se uma tendência desses pacientes serem mais jovens, mas essa diferença não foi significativa (p=0,08). Onze pacientes apresentavam reflexos miotáticos preservados e um paciente exibia hiperreflexia na admissão hospitalar. A maioria dos pacientes foi admitida sem conseguir deambular e, na alta, a maioria deambulava com ou sem apoio. Cinco crianças necessitaram de suporte ventilatório e nenhuma foi a óbito. Conclusão: Uma proporção significativa dos pacientes apresentava quadro motor assimétrico ou segmentar e reflexos miotáticos preservados. Os resultados obtidos delineiam aspectos clínicos atípicos na SGB em crianças e podem ajudar na definição diagnóstica e instituição de tratamento precoce. / Guillain-Barré syndrome (GBS) is an acute, inflammatory, peripheral neuropathy that has been being defined as an ascending flaccid tetraparesis. Atypical presentations can be frequent, particularly in children, leading to greater challenges in the diagnosis. Objectives: To analyze the epidemiological data and the prevalence of motor asymmetries in the neurological examination of children with GBS. Methods: A total of 40 medical records were analyzed, of children aged 0 to 15 years old diagnosed with GBS, admitted from January 2000 to August 2016. We evaluated the presence of motor asymmetries at the hospital admission, the clinical outcomes and the demographic and clinic-laboratorial characteristics. Results: Two patients had motor asymmetries at hospital admission and three patients admitted with symmetric tetraparesis had an initial motor asymmetry before admission. One patient progressed to asymmetric tetraparesis after being initially admitted with symmetric weakness. Eight other cases had segmental weakness at admission. Motor asymmetry and segmental weakness correlated with a static progression of symptoms (p=0.004) and these patients tended to be younger, but this difference was not significant (p=0.08). Eleven patients had preserved deep tendon reflexes and one exhibited hyperreflexia at the hospital admission. Most patients were admitted on wheel-chair or bedridden, and at discharge the majority could walk with or without help. Five children required mechanical ventilation and no patient died. Conclusion: A significant proportion of patients had asymmetric or segmental weakness and preserved deep tendon reflexes. Those results show that the so-called atypical clinical findings in children with GBS are not uncommon, and needs to be kept in mind to allow an earlier diagnosis and treatment.

Introduction: Guillain-Barré syndrome (GBS) is a neurological disease caused by an autoimmune attack on the peripheral nerves. The main symptoms are loss of motor and sensory skills in the upper and lower extremities. Autonomic dysfunction also occurs.Aim: To identify which parameters in neurography examination that are showing pathology at three different stages from the onset of symptoms. To practically perform and evaluate different electrode placements at RR-intervals.Materials and methods: The first part of this study was a retrospective study with results from 58 patients which were diagnosed with GBS in 2010-2020 at the University Hospital in Uppsala. The second part of this study included measurement of the heart rate variation with RR-intervals at different electrode placement in ten healthy volunteers. Results: In part 1 of the project, there were no significant differences between the groups at distal latency in the ulnar nerve, F-latency in the tibial nerve and in the conduction velocity in the sural nerve. However, there were significant differences in the amplitude of the radial nerve. In part 2 of the project, there were significant differences between the electrode placements, and most artifacts were found with electrodes placed on the shoulders.Conclusion: Examination with neurography and RR-intervals plays an important role in the diagnosis of GBS. As the amplitude in the radial nerve was the only one that showed significant differences between the groups, the nerve is recommended to be examined bilaterally. With a high presence of artifacts in RR-intervals with electrodes placed on the shoulders and wrists, placement on the chest is to be recommended.

At the Ottawa Hospital in Ontario, Canada, clinicians use full body immersion virtual reality to treat a variety of health conditions, including: traumatic brain injuries, post- traumatic stress disorder, acquired brain injuries, complex regional pain syndrome, spinal cord injuries, Guillain-Barré syndrome, and lower limb amputations. The system is shared between military and civilian patient populations. Viewed by clinicians and the system’s designers as a value neutral medical technology, clinical virtual reality’s sights, sounds, movements, and smells reveal cultural assumptions about universal patient experiences. In this dissertation I draw from reflexive feminist research methodologies, visual anthropology and sensory ethnography in a hospital to centre the body in current debates about digital accessibility in the 21st Century. 40 in-depth interviews with practitioners and patients, 210 clinical observations, and film and photography ground research participant experiences in day-to-day understandings of virtual reality at the hospital. In this dissertation I address an ongoing absence of the body as a site of analytical attention in anthropological studies of virtual reality. While much literature in the social sciences situates virtual reality as a ‘post-human’ technology, I argue that virtual reality treatments are always experienced, resisted and interpreted through diverse body schemata. Furthermore, virtual reality cannot be decoupled from the sensitivities, socialities and politics of particular bodies in particular places and times. The Ottawa Hospital’s Computer Assisted Rehabilitation Environment (CAREN) system features a digitally enhanced walk-in chamber, treadmills on hydraulic pistons, surround sound audio, advanced graphics and user feedback utilizing force plates and a dynamic infrared motion capture system. The CAREN system utilizes hardware and software reliant on specific assumptions about human bodies. For example, these assumptions are echoed in depictions of race, gender, class, and indigeneity. Patients using virtual reality technologies can experience more than one disability or health condition at a time, further disrupting the idea of universal user experiences. As clinicians and patients confront the limitations of body normativity in the CAREN system’s interface design, they improvise, resist, and experience virtual reality in ways that defy design agendas, ultimately shaping patient treatments and unique paths to healing and health. / Graduate