ABSTRACT Stroke can result in aphasia which is an acquired language disorder. It affects both the person with aphasia and the relatives. Previous studies have shown that people with aphasia consider themselves to have fewer difficulties with communication in comparison to their relatives’ opinions. The relatives rate the difficulties as less severe in comparison to the speech and language pathologists. The scales Communication Outcome after Stroke (COAST) and Carer Communication Outcome after Stroke (Carer COAST) can be used to investigate the experiences of the people with aphasia and their relatives regarding the language and communication ability of people with aphasia and the quality of life for both groups. By using COAST and Carer COAST this study aimed to investigate the experiences of people with aphasia and their relatives and to compare their experiences to the assessment of language. This study also aimed to start a validation of COAST and Carer COAST on a Swedish population. A qualitative and a quantitative analysis were used. Twenty people with aphasia and nineteen relatives were participating. The ratings between people with aphasia, their relatives and the speech and language pathologist did not differ a lot even though the relatives rated the difficulties as most severe. The quality of life was negatively affected for almost all participants. This study provided deeper insight in the different experiences which can be crucial in the clinical practice. The validation of COAST and Carer COAST can contribute to an extended use of the scales clinically and in research. Keywords: aphasia, stroke, relative, experiences, speech and language pathology, Communication Outcome after Stroke, Carer Communication Outcome after Stroke SAMMANFATTNING Afasi är en förvärvad språkstörning som kan uppkomma efter stroke och påverkar både personen som fått afasi och de närstående. Enligt tidigare studier anser personer med afasi att de har mindre kommunikationssvårigheter än vad de närstående upplever. De närstående upplever i sin tur svårigheterna som mindre än vad logopeder bedömer. Skattningsformulären Communication Outcome after Stroke (COAST) och Carer Communication Outcome after Stroke (Carer COAST) kan användas för att undersöka upplevelserna hos personer med afasi och deras närstående avseende den språkliga och kommunikativa förmågan hos personen med afasi samt livskvaliteten hos båda parter. Studien syftade till att med COAST och Carer COAST studera upplevelserna hos personer med afasi och deras närstående samt hur dessa förhöll sig till en språklig bedömning. Ytterligare ett syfte var att påbörja validering av COAST och Carer COAST på en svensk population. En kvalitativ och en kvantitativ analys gjordes. Tjugo personer med afasi och nitton närstående deltog. Det var inga större skillnader mellan skattningarna av deltagarna med afasi och deras närstående. Skattningarna stämde även till stor del överens med den språkliga bedömningen även om de närstående överlag skattade svårigheterna som störst. Livskvaliteten var negativt påverkad för de flesta deltagarna. Studiens resultat ökar insikten om de olika upplevelserna vilket kan vara av betydelse i den kliniska verksamheten. Valideringen av COAST och Carer COAST kan innebära att skattningsskalorna i större utsträckning kan användas kliniskt och inom forskning.   Nyckelord: afasi, stroke, närstående, upplevelser, logopedi, Communication Outcome after Stroke, Carer Communication Outcome after Stroke

Syfte: Syftet med litteraturstudien var att belysa vuxna anhörigas upplevelser av livet efter att en närstående drabbats av stroke och fått bestående funktionshinder. Metod: Studien genomfördes som en litteraturstudie, 16 vetenskapliga artiklar granskades och sammanställdes sedan utifrån perspektiven fysiskt, psykiskt och socialt. Huvudresultat: Litteraturstudiens resultat visar att anhöriga till strokedrabbade påverkades ur ett fysiskt, psykiskt och socialt perspektiv. De kände sig utmattade till följd av det ökade ansvaret som stroken förde med sig. Deras liv vändes upp och ner och många var missnöjda med vården och dess bemötande. Anhöriga upplevde brist på information och kände att de saknade kunskap om området. Känslor som oro, frustration, sorg, nedstämdhet och skuldkänslor beskrevs. De anhöriga kände sig tvingade att hålla tillbaka sina känslor och de uppgav att stöd från familj, vänner och personal var viktigt och gav dem styrka. Kvinnliga anhöriga visade sig vara mer utsatta än manliga. Anhöriga kände tacksamhet för att den strokedrabbade överlevt. De upplevde brist på egentid, stagnerade framtidsplaner och många kände sig socialt isolerade. De förändrade rollerna som stroken innebar upplevdes som påfrestande. Slutsats: Kunskap om hur anhöriga upplever livet efter en närståendes stroke kan ge vägledning i sjuksköterskans arbete med att stödja och informera anhöriga. / Purpose: The purpose of this study was to illuminate the adult relatives experiences of life after a close person suffered a stroke and become permanently disabled. Method: The study was conducted as a literature review, 16 research articles were examined and then compiled from a physically, mentally and socially perspective. Main results: The literature study shows that relatives of stroke survivors were affected from a physical, mental and social perspective. They felt fatigued as a result of the increased responsibility that the stroke resulted in. Their lives were turned upside down and many were dissatisfied with the care and treatment. Family members felt a lack of information and felt they lacked knowledge of the area. Feelings of anxiety, frustration, grief, depression and guilt were described. The relatives felt compelled to hold back their emotions and they indicated that support from family, friends and staff was important and gave them strength. Female relatives were found to be more vulnerable than male relatives. Relatives felt gratitude for the survival of the stroke victim. They experienced lack of own time, stagnated plans of the future and experienced being socially isolated. The changed roles was experienced as stressful. Conclusion: Knowledge about how family members experience life after a stroke of a close one, may give guidance to the nurse in the work of supporting and informing relatives.

Bakgrund: Stroke är en av de största folksjukdomar. År 2018 drabbades cirka 25 500 individer och närmare 6 200 avled av sjukdomen i Sverige. Kvarstående symtom som förekommer vid stroke, beroende på vilken sidan av hjärnhalvan som blir drabbat inverkar på patienten fysiskt  och psykiskt, vilken i sin tur påverkas patienten socialt. Sjuksköterskan i detta fall har ett stort ansvar att ta hänsyn till patientens tillstånd och omvårdnadsbehov efter en stroke.   Syfte: Syftet med denna litteraturstudie var att beskriva personers upplevelse av livet efter en stroke. Metod: En beskrivande litteraturstudie som inkluderar 15 vetenskapliga artiklar med både kvalitativ och kvantitativ ansats. Databasen Medline via PubMed tillämpades för att söka fram artiklarna. Huvudresultat: Efter en stroke kan det uppkomma flertal kvarstående symtom, vilket kan påverka personernas fysiska, psykiska, samt sociala liv. Funktionshinder var den vanligaste kvarvarande symtom till personernas förändrade liv. Flera av dem upplevde en känsla av rädsla, oro, skuldkänslor, depression, förändrad självbild och självkänsla. Alla dessa omständigheter ledde till att drabbade personerna självmedvetet isolerade sig, vilket påverkade deras sociala nätverk. Trots dessa faktorer upplevde  de drabbade personerna ett hopp av att återhämtning skulle uppnås så småningom. Slutsats: Personer som drabbats av stroke beskrev upplevelser av olika psykiska, fysiska och sociala hinder till följd av en stroke. Trots dessa faktorer upplevde personerna ett hopp, motivation och positiva känslor. För sjuksköterskan är det viktigt att ha en tillräcklig kunskap om allt som gäller stroke för att kunna tillgodose personers omvårdnadsbehov, vilket hjälper de att kunna förstå, hantera tillståndet samt återhämta sig utan större svårigheter. / Background: Stroke is a widespread disease that affected approximately 25 500 people in 2018 and nearly 6 200 died of the disease in Sweden. Remaining symptoms that occur at stroke, depending on which side of the brain that been affected, effects the patient physically and psychically, which in turn affects the patient socially. The nurse in this case has a great responsibility to take  a deference about patient's condition and nursings needs after the stroke. Aim: The aim with this literature study was to describe person’s experience of the life after a stroke.  Method: A descriptive literature study that includes 15 scientific articles with both qvalitativ and qvantitativ sample. The Medline database via PubMed was used to search for the articles. Results: Persons who affected of stroke described experiences about their physically changes, psychically changes, and sociallity life changes. The functional obstacle created for example fear, depression, anxiety, debt feeling, changes of self-image and self-feeling. All of these circumstances led the affected individuals to self-isolate themselves, which affected their social network. Despite these factors, the affected person’s experienced a hope that recovery would eventually be achieved. Conclusion: The persons who affected of stroke described experiences of various psychically and sociality obstacles as result of a stroke. Despite these factors, persons experienced a hope, motivation and positive emotions. For the nurse it’s important to have sufficient knowledge about everything that concerns stroke, to be able to cater for person’s nursing needs, which help them to understand, manage the condition and recover themselves without any major difficulties.

Bakgrund: stroke betraktas som ett samlingsnamn för hjärninfarkt och hjärnblödning. Stroke är ett globalt folkhälsoproblem som tillhör de fem vanligaste dödsorsakerna i Sverige. Risken att drabbas av stroke skiljer sig mellan åldrar, socioekonomi och insjuknandet ser olika ut även geografiskt. Stroke kan förekomma i olika åldrar, men äldre personer har större risk att drabbas av stroke än yngre personer. Stroke kan orsaka funktionsnedsättningar och leda till många olika begränsningar i patients vardagsliv. Antalet strokefall har minskat bland både kvinnor och män under perioden 2007–2018. Syfte: Var att undersöka patientens upplevelse av sitt liv efter stroken. Metod: En litteraturöversikt med induktiv ansats valde och endast vetenskapliga artiklar med kvalitativ metod har använts i studien. För analysering av data användes Fribergs (2017) metod för kvalitativ forskning. Resultat: Litteratursökningen gav tio artiklar för vidare analys. Resultatet av samtliga artiklar har tillsammans bildat underlag för den kvalitativa innehållsanalysen. Resultatet redovisar strokepatienters känslor och upplevelser i vardagen och presenterar följder och konsekvenser av stroke. Huvudresultatet av studien var att patienter upplevde besvär av såväl fysisk, psykisk, emotionell som social karaktär. Slutsats: Patienten upplever en förändrad syn över sin livsvärld efter stroke. Sjukdomen kan leda till förlust av förmågor och många begränsningar i det vardagliga livet. / Introduction: stroke is considered a collective name for cerebral infarction and cerebral hemorrhage. Stroke is a global public health problem that is one of the five most common causes of death in Sweden. The risk of suffering a stroke differs between ages, socioeconomics and the disease also differ geographically. Stroke can occur at different ages, but older people are at greater risk of having a stroke than younger people. Stroke can cause disabilities and lead to many different limitations in the patient's daily life. The number of stroke cases has decreased among both women and men during the period 2007–2018. Aim: was to examine the patient's experience of his life after the stroke. Method: a literature review with an inductive approach was chosen and only scientific articles with a qualitative method were used in the study. For analysis of data, Friberg's (2017) method was used to qualitative research.  Results: The literature search yielded ten articles for further analysis. The results of all articles have together formed the basis for the qualitative content analysis. The results report stroke patients' feelings and experiences in everyday life and present the consequences and consequences of stroke. The main result of the study was that patients experienced problems of a physical, mental, emotional and social nature. Conclusion: The patient experiences a changed view of their life world after stroke. The disease can lead to loss of abilities and many limitations in everyday life.

A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, in partial fulfilment of the requirements for the degree of Master of Science in Physiotherapy Johannesburg, 2012 / Introduction: Stroke continues to be a major public health problem for both the developed and developing world despite the various advances in health care. The economic burden of stroke is ever increasing and in light of this, return to work post-stroke is becoming an important area of research for therapists. Thus the main aims of the study were to establish the rate of return to work of patients following stroke and to establish the patients’ perceived factors which influence their return to work after stroke. Method This was a quantitative cross sectional study. A sample of convenience of ninety seven participants were selected from a list of patients obtained from various rehabilitation units and government clinics within the Gauteng province. A self-designed questionnaire was used. A pilot study was conducted to determine the questionnaire’s reliability and validity, and the validity, inter-rater and intra-rater reliability were all found to be satisfactory. The participants were contacted and interviewed at their homes or a location suitable for them using a self-designed questionnaire. The percentage of patients that returned to work was determined and reasons for returning or not returning to work were summarised using frequencies and percentages. A univariate and then multivariate analysis was performed to establish perceived factors which had an influence on return to work Results The study sample had more males than females with an overall mean age of 51years. They were mostly black and between 18 months and 24 months post-stroke. The most common co-morbidities were fatigue and hypertension. There was a 34% return to work rate, with 3% stopping work after a period of time, leaving 31% of the sample working at the time of interview. The most common reasons for returning to work were financial (77%), enjoyment of work (77%) and personal development (73%). For those who did not return to v work the two most common reasons were upper limb dysfunction (61%) and walking difficulties (53%). The main factors that decreased likelihood of return to work included depression and not paying life insurance or monthly car repayments. Conclusion The return to work rate following stroke in this study group is in line with other countries around the world, although it is still relatively low with less than a third of patients with stroke returning to work. Enjoyment of work was shown to be as important a motivating factor for return to work as finances, and physical fallout was the most demotivating factor. Depression was the most likely factor to decrease return to work.

Bakgrund: Stroke är en av de största folksjukdomarna i Sverige och årligen drabbas cirka 30 000 personer av stroke. Sjukdomen är en livshotande händelse och kan medföra funktionsnedsättningar i olika grad som påverkar på personers liv. Det kan även påverka på de anhörigas liv som tar hand om sin familjemedlem som har insjuknat. Syfte: Att beskriva patienters upplevelser av att leva med funktionsnedsättningar det första året efter en stroke. Metod: En systematisk litteraturstudie av vårdvetenskapliga artiklar med kvalitativ ansats enligt Evans beskrivande syntes. Resultat: Upplevelser som framkom i resultatet delades in i två teman: förlorad kontroll över kroppen och återfå kontroll över livet. Utifrån dessa teman framkom sex underteman: att bli instängd, att bli orkeslös, att leva med förlorad identitet, att leva med förändrad sinnesstämning, att anpassa sig till funktionsnedsättningar och att uppleva hopp. Slutsats: Att leva med funktionsnedsättningar efter en stroke påverkar på patienters kropp, själ och ande samt leder det till ett nytt och annorlunda liv. Sjuksköterskan bör uppmärksamma upplevelser som medförs av funktionsnedsättningar och anpassa vården efter detta. Att kunna lyssna, ge stöd och använda sin kunskap vid bemötande av patienter efter en stroke medför att kvalitén på omvårdnaden kan förbättras. / Background: Stroke is one of the most common widespread diseases in Sweden and approximately 30 000 people suffers each year. The disease is a life-threatening experience and can lead to disabilities and affect the patient’s lifestyle. It can also affect the lives of the relatives who take care of their family member who has been diagnosed with a stroke. Aim: To describe patient’s experiences of living with the disabilities the first year after a stroke. Method: A systematic literature study of nursing research articles with qualitative approach according to Evans descriptive synthesis. Results: Experiences, which were identified in the result, were divided into two themes: Lost control of the body and regain control of their life. Based on the themes six sub-themes appeared: To be trapped, to be decrepit, to live with lost identity, to live with altered mood, to adapt to the disabilities and to experience hope. Conclusion: Living with disabilities after a stroke affect a patient’s body, mind and spirit, and lead to a new and different life. Nurses should pay attention to victim’s experiences of the disabilities and adapt the nursing accordingly. Being able to listen, provide support and use their knowledge in the treatment of patients after a stroke can improve the quality of healthcare.

Introdução: Muitos pacientes acometidos por acidente vascular cerebral (AVC) sofrem sequelas motoras e cognitivas permanentes, as quais promovem maior risco de quedas que constitui a complicação mais frequente nesse grupo de pacientes. Dessa forma, a identificação dos fatores que predispõem a quedas em pacientes após AVC se faz necessária para a elaboração de estratégias de prevenção dos fatores modificáveis a fim de evitar suas consequências, melhorar prognóstico funcional, expectativa e qualidade de vida desta enorme população. Objetivos: O objetivo primário deste estudo foi analisar os fatores preditivos de quedas em uma amostra de pacientes acometidos por AVC atendidos em um hospital de referência de Ribeirão Preto e incluídos no Registro de AVC de Ribeirão Preto (REAVER), no período de seis meses após o AVC. Os objetivos secundários foram analisar a frequência relativa de quedas nos 6 primeiro meses após o AVC; analisar as características da ocorrência de quedas ocorridas nos 6 primeiros meses após o AVC; analisar as características clínicas, funcionais e processos de reabilitação em pacientes caidores e não-caidores da amostra estudada. Metodologia: Foram incluídos todos os pacientes com diagnóstico de AVC isquêmico ou hemorrágico internados na Unidade de Emergência do HCFMRP-USP no período de setembro de 2015 a março de 2016 com Escala de Rankin modificado prévia menor que 1. De forma retrospectiva, foram coletadas variáveis do REAVER referentes aos dados pessoais, doenças associadas, déficits neurológicos, funcionalidade, estado cognitivo e reabilitação. De forma prospectiva após 6 meses do AVC, coletamos por meio de contato telefônico informações sobre uso de medicações que afetam o sistema nervoso central, presença de parkinsonismo, demência após AVC, sintomas de tontura e desequilíbrio, déficit visual, além da ocorrência, número, local e circunstâncias em que as quedas ocorreram neste período. Resultados: Foram investigados 304 e incluídos 129 pacientes no estudo, com uma prevalência de 31 quedas que ocorreram em 24% da amostra. Os locais mais frequentes de queda foram nas proximidades do quarto do paciente no período de maior atividade (manhã e tarde). A maior parte das quedas ocorreram entre 3 a 6 meses após o evento. As principais atividades envolvidas foram a deambulação e transferências. Encontramos associação positiva entre ocorrência de quedas e os seguintes fatores: déficit visual antes do AVC (p=0,02), síndrome demencial após AVC (p=0,01), uso de inibidores da acetilcolinesterase (p=0,01), parkinsonismo (p =0,01), sintomas de tontura e desequilíbrio após o AVC (p<0,001) e Escala Modificada de Rankin em 3 meses após o AVC (p=0,007). A análise de regressão logística evidenciou que a presença de desequilíbrio postural ou tonturas são fatores preditivos independentes para quedas na amostra estudada. Conclusões: As quedas são um problema frequente em pacientes que sofreram AVC e sua ocorrência é maior nos períodos de atividade do paciente e em atividades simples como deambulação e transferências. Alterações do equilíbrio postural consolida-se como fator preditivo independente de quedas após o AVC / Introduction: Many patients affected by stroke suffer from permanent motor and cognitive deficits, which lead to greater risk of falls that constitutes the most frequent complication in this group of patients. Thus, the identification of the factors that predict falls in patients after stroke is necessary for the elaboration of prevention strategies to avoid falls\' consequences, increasing functional prognosis, expectancy and quality of life in this huge population. Objectives: The primary goal of the study was to analyze the fall predictor factors in a sample of stroke patients included in the Stroke Register of Ribeirão Preto (REAVER) in a period of six months after stroke. The secondary goals were to analyze the relative frequency of falls in the first six months after stroke; to analyze the characteristics of fall occurrence in the first six months after stroke; to investigate the rehabilitation processes, clinical and functional characteristics in faller and non-faller patients in this sample. Methodology: We included all stroke patients with ischemic and hemorrhagic strokes admitted to the Emergency U nit of the HCFMRP-USP, between 2015 September and 2016 March, with previous Modified Rankin Scale (mRS) less than 1. We did a retrospective collection of data from REAVER related to personal data, concomitant diseases, neurologic deficits, functionality, cognitive assessment, and rehabilitation. After six months of the stroke ictus, we did a prospective investigation by phone regarding the use of medications that affect central nervous system, parkinsonism and dementia before stroke, vertigo, imbalance, and visual deficit after stroke, in addition to the occurrence, number, location and circumstances of falls in six months period after stroke. Results: We investigated 304 patients and 129 were included in the study, with a prevalence of 31 falls that occurred in 24% of the study sample. The most frequent locations of falls were next to the patient\'s bedroom and in the period of more activity (morning and afternoon). Most of the falls occurred between 3 to 6 months after the stroke. The main activities related to the falls were gait and transfer. We found positive association between the occurrence of falls and the following factors: visual deficits before stroke (p=0,02), dementia after stroke (p=0,01), use of acetylcholinesterase inhibitors (p=0,01), parkinsonism (p=0,01), vertigo and imbalance after stroke (p<0,001) and mRS 3 months after stroke (p=0,007). The logistic regression analysis showed that vertigo and imbalance are independent predictive factors for falls in this study. Conclusions: Falls are frequent after stroke. Their occurrence is greater in the periods of more activity and in simple activities like gait and transfer. Disturbance of postural balance is consolidated as an independent risk factor for falls