Symptoms and consequences of subarachnoid haemorrhage after 7 years.

OBJECTIVES: Short-term follow-up studies after a subarachnoid haemorrhage (SAH) have shown impaired cognition, fatigue, depression and anxiety, but less is known regarding long-term consequences. The aim of this study was to investigate health outcomes in persons 7 years after SAH. MATERIALS AND METHODS: This is a descriptive cohort follow-up study of persons with non-traumatic SAH treated at Sahlgrenska University Hospital, Gothenburg, Sweden. The follow-up was conducted 7 years post-treatment and included home visits using forms and questionnaires about health outcomes; the Barthel Index (BI), modified Rankin Scale (mRS), National Institutes of Health Stroke Scale (NIHSS), Hospital Anxiety and Depression Scale (HADS), Montreal Cognitive Assessment (MoCA) and Multidimensional Fatigue Inventory (MFI). RESULTS: Seven years post-SAH, 33 persons fulfilled the inclusion criteria, of whom 18 (55%) participated (median age 63 years). Cognitive impairment was present in 11 participants, assessed with the MoCA, where the item of delayed recall was most difficult. The majority (n = 16) were independent in activities of daily living (ADL), and few (n = 3) had physical symptoms according to the NIHSS. However, three participants were free from disability according to the mRS. Nearly, half of the participants had symptoms of anxiety (n = 8). Three had symptoms of depression and more than half experienced fatigue. CONCLUSION: The physical function and independency in ADL is high among long-term SAH survivors. Despite this, only a few were completely free from disability, and the main problems 7 years after SAH were cognitive impairment and anxiety.

Locked-in syndrome in Sweden, an explorative study of persons who underwent rehabilitation: a cohort study.

OBJECTIVE: Locked-in syndrome (LiS) is a rare condition, characterised by a complete paresis except for vertical eye movements and blinking with cognitive functions intact, commonly caused by ischaemia in the ventral pons. Previous studies have indicated that persons with LiS can live on for many years and have a good quality of life (QoL). To our knowledge, LiS has never been studied in Sweden. The aim was to explore LiS in Sweden; describing population characteristics, living situation, mortality/cause of death and health-related QoL/impact on participation. DESIGN: Explorative, nationwide study with two parts (quantitative and qualitative). Persons registered in the national quality register WebRehab during 2007-2014 were eligible. PARTICIPANTS: Ten persons were identified in part 1, four participated in part 2. During part 1, data were collected from WebRehab, medical charts and registers, while questionnaires and interviews were used during part 2. RESULTS: Seven out of 10 were men, median age at onset was 49 years and the cause of LiS was in all cases stroke, 70% of which ischaemic. Three were deceased with a median time of survival of 1.9 years. Seven were still alive, with a median time elapsed since onset of 5.8 years. Three participants experienced good QoL. Information, respect from professionals and more specialised technical devices were three areas containing unfulfilled needs. CONCLUSION: This was the first study conducted in Sweden and the characteristics of this population were like those studied abroad. In this study, the persons with LiS who were interviewed expressed the need for proper care, appropriate technical aids and a supportive environment in order to have QoL. However, there is still much room for improvements.

Experiences of returning to work and maintaining work 7 to 8 years after a stroke: a qualitative interview study in Sweden.

OBJECTIVE: To explore how persons experienced return to work (RTW) and their work situation 7 to 8 years after a stroke. DESIGN: An explorative qualitative design with individual interviews. The data analysis was inductive thematic and three researchers collaborated during the analysis process. PARTICIPANTS: The study population included five women and eight men who had a stroke during 2009-2010, received care at the Sahlgrenska University Hospital in Gothenburg, Sweden and RTW after stroke and it was a heterogenic sample based on age, occupation, stroke severity and time to RTW. RESULTS: The analysis led to four themes; motivated and RTW while struggling with impairments, mixed feelings in the RTW process, still at work though restricted and social support for a sustainable work situation. The themes revealed that participants were motivated to RTW while struggling with impairments. The RTW process evoked mixed feelings of worry and grief over lost functions but also acceptance and gratitude for being able to work. Although maintaining work 7 to 8 years after experiencing a stroke, most were restricted in some way. Fatigue and cognitive impairments meant having to set limits, omit work tasks and rest at work, but also rest during free time and refraining from social activities in order to manage work. Participants avoided work-related stress if they could because of aggravated symptoms and/or fear of a new stroke. Support from supervisors and colleagues was often crucial for a sustainable work situation. CONCLUSION: Maintaining work can be a continuous struggle with invisible impairments many years after a stroke. Strategies for managing work are dependent on each individual work situation, where support and understanding at work seem to be crucial for a sustainable work situation.

Consequences and coping strategies six years after a subarachnoid hemorrhage - A qualitative study.

BACKGROUND: After a subarachnoid haemorrhage (SAH), continuing impairment is common and may impact the person's life. There is a lack of knowledge regarding long-term consequences experienced. PURPOSE: To explore experiences of the care and rehabilitation as well as the consequences and strategies used to cope with everyday life six years post SAH. METHODS: An explorative interview study with a qualitative design. Individual interviews, with open ended questions, using an interview guide were performed with sixteen participants (mean age 63, 8 men, 8 women) six years post SAH. Data was analyzed according to a descriptive thematic analysis, and themes were discovered inductively. RESULTS: Two major themes from the analysis, both including four sub-themes, were identified; these themes were consequences of the SAH and coping strategies. Participants were grateful to have survived the SAH and most were satisfied with their acute medical care. If discharged directly from the neurosurgical unit participants can feel abandoned. In contrast, participants who were referred to a rehabilitation clinic felt supported and informed. Cognitive problems, such as impaired memory and mental fatigue, were reported as still present six years post SAH. Coping strategies were; receiving support from family, society, employers, or technical equipment. At work, talking to colleagues and to taking breaks were common. Participants described hiding their symptoms from employers and friends, as well as trying to continue doing tasks in the same manner as prior to the SAH. If this was not possible, some refrained from doing these tasks. They went through a mourning process, fear, and worries. CONCLUSIONS: Participants reported several long-term consequences which impacted on their daily lives post SAH, and different coping strategies were used to cope with these problems. Participants reported lack of awareness regarding the consequences of SAH and stressed the importance of structured multidisciplinary follow-ups, which mostly is missing.

Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study.

INTRODUCTION/AIM: Haemophilia is caused by deficiency in coagulation factor VIII or IX. Treatment with the missing coagulation factors has been available in most developed countries for several decades. The aim was to explore the experiences of adults living with severe or moderate haemophilia and their coping strategies at a single centre in Sweden. METHOD: The interview study had a qualitative empirical approach and was analyzed on the basis of the method empirical phenomenological psychology. The sample included 14 participants, mean age 42 (19-80 y), who met the inclusion criteria and to saturation of information. RESULTS: General characteristics were; All were satisfied with and grateful for access to medication. An acceptance of the disorder and willingness to live a normal life was identified among all participants. They were all content with the care provided by Haemophilia Treatment Centre (HTC) and felt supported by its multidisciplinary team. Four typologies were identified; Protective adults and assertive children during up-bringing, finding a role in social context, symptoms and treatments, fear of limited resources in the future. Task-, emotional- and avoidance coping strategies were seen in the interviews. The most prominent coping strategy was task oriented. CONCLUSION: This interview study with Swedish PWH shows that they strive for normality and adaptation in social activities throughout life finding their own niche. The PWH expressed the importance of knowledge and support from the comprehensive medical team at HTC and therefore it seems important to continue comprehensive medical care at HTC in order to follow-up the haemophilia persons regularly.

Awareness and the arguments for and against the International Classification of Functioning, Disability and Health among representatives of disability organisations.

Disability organisations have not been engaged in the debate about the International Classification of Functioning, Disability and Health (ICF) in Sweden. We wanted to know representatives' attitudes about the ICF. The aim of the study was to elucidate the arguments for and against the ICF among representatives of disability organisations. The study consisted of eighteen representatives (from six disability organisations) that answered electronic questionnaires. The questionnaires involved ten open questions about the arguments for and against the ICF. The answers of the questionnaires have been categorized according to qualitative content analysis. Our results indicated four themes: awareness, arguments for and against, influence and the future. More than half of the representatives had very limited awareness of the ICF. There was an explicit criticism of individual classification but more positive comments about classification on an aggregated level. The most important issue for representatives was influencing social policy in society, not learning and spreading information about the ICF.

Work participation among middle-aged persons with cerebral palsy or spina bifida--a longitudinal study.

BACKGROUND: Most studies of work participation among persons with cerebral palsy (CP) or spina bifida (SB) have focused on young adults, little is known about older adults. OBJECTIVE: The aim of this study was to compare work participation in 2009 with 1997 (98). METHODS: Two groups of persons with CP or SB in Gothenburg, Sweden with an IQ above 70 were interviewed using a structured questionnaire regarding work participation. Group (A) was studied in 1983 (n = 55), in 1997 (n = 42) and in 2009 (n = 28). Group (B) was studied in 1998 (n = 30) and in 2009 (n = 25). In this study, the persons interviewed in 2009 were compared with their own data from 1997 (8), with a non-parametric test. RESULTS: Work participation had significantly decreased (p < 0.004) since 1997 (8); more persons worked part time or had stopped working. Thirty-eight percent had continued their education during 1997 (8)-2009, most of them worked. Of 34 persons working in 2009, 56% had wage subsidies, an increase from 42% in 1997 (8). Of the persons who worked and had continued their education, 37.5% had wage subsidies while, among persons without continued education, 72% had this support. Transportation to work functioned but not as well as in 1997 (8). More persons used transportation for people with a disability in 2009 than in 1997 (8) and criticism was expressed about the transportation system. CONCLUSIONS: Results showed that work participation for middle-aged persons with CP or SB without intellectual disability decreased with age but continued education and wage subsidies facilitated work participation.

Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges.

Participation in society is vital to mental health and is beneficial to individuals and society. The goal of this study was to provide insight into how people with cerebral palsy and spina bifida view their experiences of participation and to examine factors that might influence this issue. The results show that participants emphasized the importance of being accepted and treated equally. Living independently and being able to play an active and leading role in their lives was also essential. Participation was described as a process of interaction between a person and society, with mutual responsibility in respect to integration.

The ICF: International Classification of Functioning, Disability and Health (ICF)--a Swiss army knife? Accessibility and disability in a Scandinavian disability magazine (SDM)--a quantitative content analysis.

BACKGROUND: The study describes the extent to which the concept of accessibility and accessibility issues has been reported in a national Scandinavian disability magazine. In this study particular attention is paid to how the compatibility between the various domains of the international classification - International Classification of Functioning, Disability and Health (ICF) - has been covered in the magazine over a decade. Furthermore, other types of descriptions that the magazine has made of accessibility for people with physical disabilities are considered. METHODS: The study is based on a quantitative content analysis of a total of 326 articles from the Swedish disability magazine (SDM); 450 text pages published during the years 2000-2009. The magazine's coverage has been comprehensive. RESULTS AND CONCLUSIONS: More than half of the studied texts were news items about various accessibility issues. Every third article can be characterised as a news article or feature article. The most frequently reported of the ICF domains consist of two perspectives: environmental accessibility and civil rights. Public opinion articles in the form of letters to editors and editorials focused on accessibility have a low frequency. Likewise, research reports are few. The study has included a review of illustrations and photographs. The illustrations are generally of high quality, reinforcing the disability message of the article.