| 1. |
- Persson, Hanna C, 1979, et al.
(författare)
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Consequences and coping strategies six years after a subarachnoid hemorrhage - A qualitative study
- 2017
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Ingår i: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 12:8
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Tidskriftsartikel (refereegranskat)abstract
- 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. 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. 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. 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. 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.
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| 2. |
- Törnbom, Karin, 1982, et al.
(författare)
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Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges.
- 2013
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Ingår i: Journal of social work in disability & rehabilitation. - 1536-7118. ; 12:4, s. 256-71
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Törnbom, Karin, 1982, et al.
(författare)
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Swedish Citizens with Cerebral Palsy or Spina Bifida – Perceived Experiences of Social Life and Employment
- 2017
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Ingår i: Review of disability studies: an international journal. - 1552-9215. ; 13:1, s. 47-63
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Tidskriftsartikel (refereegranskat)abstract
- This article offers insight into the ways in which people with cerebral palsy and spina bifida reflect upon their experiences of participation in relation to social life and employment. The qualitative method was used to explore experiences of participation among adults with CP or SB, using semi structured interviews. Participants expressed a desire to make a contribution to the labor market, to have sustainable relationships and to be accepted by others.
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| 4. |
- Brodin, Elisabeth, et al.
(författare)
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Persons with Haemophilia in Sweden- Experiences and Strategies in Everyday Life. A Single Centre Study.
- 2015
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 10:10
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
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| 6. |
- Jonsson, Ulrica, et al.
(författare)
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Hur personer med cerebral pares eller ryggmärgsbråck upplever att deras symptom och hjälpbehov förändras över tid och om hjälpbehoven blir tillgodosedda eller inte
- 2010
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Ingår i: läkarstämman 1/12-2010.
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Konferensbidrag (refereegranskat)abstract
- Hur personer med cerebral pares eller ryggmärgsbråck upplever att deras symptom och hjälpbehov förändras över tid och om hjälpbehoven blir tillgodosedda eller inte Ulrica Jonsson specialistläkare rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och handikappförvaltningen i Göteborg Katharina S.Sunnerhagen professor rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och Sunnaas Rehabiliteringssjukhus, Medicinska fakulteten, Oslo Universitet Marie Törnbom lektor, med.dr. rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och Institutionen för socialt arbete, Göteborgs universitet Bakgrund Få studier har undersökt hur symptom och hjälpbehov förändras över tid bland personer med cerebral pares eller ryggmärgsbråck. Vi hade dessa frågor i fokus och undersökte också vilka aktuella kontakter med sjukvårdspersonal och andra instanser personerna hade och identifierade behov som personerna upplevde inte blev tillgodosedda. Metod En longitudinell uppföljning där två grupper personer med cerebral pares eller ryggmärgsbråck utan intellektuellt funktionshinderintervjuades per telefon med ett halvstrukturerat frågeformulär, med kroppsliga besvär och tillgodosedda och inte tillgodosedda hjälpbehov i fokus. Grupp A studerades 1983 (antal 55), 1997 (antal 42) och 2009 (antal 28). En annan grupp (B) studerades 1998 (antal 30) och 2009 (antal 25). Resultat Symptomen förvärrades signifikant i grupp A mellan 1997 och 2009 jämfört med grupp B. Antalet personer som behöver praktisk hjälp ökade signifikant i båda grupperna mellan 1997-1998 och 2009. Praktisk hjälp verkställdes framför allt av de närmaste, personliga assistenter och av färdtjänst och majoriteten var nöjda med den hjälp de fick. De flesta i båda grupperna hade kontakter med sjukvårdspersonal och en majoritet av grupp A och en tredjedel av grupp B ville ha mer hjälp, speciellt ville man ha tillgång till ett specialiserat sjukvårdsteam. Några ville ha mindre byråkrati och ett bättre bemötande från socialtjänst, försäkringskassa, arbetsförmedling och färdtjänst. Sammanfattning Som en konsekvens av förvärrade symptom ökar behovet av praktisk hjälp över tid. Behovet av tillgång till specialiserad vård kvarstår hela livet.
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| 7. |
- Lundälv, Jörgen, 1966, et al.
(författare)
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Awareness and the Arguments for and against the International Classification of Functioning, Disability and Health among Representatives of Disability Organisations
- 2015
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1660-4601 .- 1661-7827. ; 3:12, s. 3293-3300
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Lundälv, Jörgen, 1966, et al.
(författare)
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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
- 2012
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Ingår i: Health Policy. - : Elsevier BV. - 0168-8510 .- 1872-6054. ; 108:1, s. 67-75
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Tidskriftsartikel (refereegranskat)abstract
- 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. Keywords Accessibility; Disability; Swedish disability magazine (SDM); Quantitative content analysis; The International Classification of Functioning; Disability and Health (ICF); Sweden
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| 9. |
- Palstam, Annie, et al.
(författare)
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Experiences of returning to work and maintaining work 7 to 8 years after a stroke : a qualitative interview study in Sweden
- 2018
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 8:7
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
- Persson, Hanna C, 1979, et al.
(författare)
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Symptoms and consequences of subarachnoid haemorrhage after 7years.
- 2019
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Ingår i: Acta neurologica Scandinavica. - : Hindawi Limited. - 1600-0404 .- 0001-6314. ; 140:6, s. 429-434
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Tidskriftsartikel (refereegranskat)abstract
- 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 7years after SAH.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 7years 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).Seven years post-SAH, 33 persons fulfilled the inclusion criteria, of whom 18 (55%) participated (median age 63years). 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.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 7years after SAH were cognitive impairment and anxiety.
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| 11. |
- Svernling, Kajsa, et al.
(författare)
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Locked-in syndrome in Sweden, an explorative study of persons who underwent rehabilitation: a cohort study.
- 2019
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Ingår i: BMJ open. - : BMJ. - 2044-6055. ; 9:4
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Tidskriftsartikel (refereegranskat)abstract
- 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.Explorative, nationwide study with two parts (quantitative and qualitative). Persons registered in the national quality register WebRehab during 2007-2014 were eligible.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.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.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.
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| 12. |
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| 13. |
- Törnbom, Marie, 1950
(författare)
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Arbetsförhållanden och arbetstillfredsställelse över tid bland personer med cerebral pares eller ryggmärgsbråck
- 2010
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Ingår i: läkarstämman i Göteborg 1/12-2010.
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Konferensbidrag (refereegranskat)abstract
- Arbetsförhållanden och arbetstillfredsställelse över tid bland personer med cerebral pares eller ryggmärgsbråck Marie Törnbom lektor, med.dr. rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och Institutionen för socialt arbete, Göteborgs universitet Ulrica Jonsson specialistläkare rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och handikappförvaltningen i Göteborg Katharina S.Sunnerhagen professor rehabiliteringsmedicin, sektionen för klinisk neurovetenskap och rehabilitering, Sahlgrenska Universitetssjukhuset och Sunnaas Rehabiliteringssjukhus, Medicinska fakulteten, Oslo Universitet Bakgrund Få studier har undersökt arbetsförhållanden över tid bland samma personer med cerebral pares eller ryggmärgsbråck. Vi undersökte arbetsförhållanden och arbetstillfredsställelse över tid bland personer med dessa diagnoser. Metod En longitudinell uppföljning med två grupper personer med cerebral pares eller ryggmärgsbråck utan intellektuellt funktionshinder, intervjuades per telefon med ett halvstrukturerat frågeformulär, med arbetsförhållanden och arbetstillfredsställelse i fokus. Vi använde också ett instrument, ”Motivation för förändring” om arbetstillfredsställelse 2009. Grupp A studerades 1983 (antal 55), 1997 (antal 42) och 2009 (antal 28). En annan grupp (B) studerades 1998 (antal 30) och 2009 (antal 25). Resultat Andelen personer som arbetar har minskat något över tid i både grupp A och B, fler har fått en varaktig hel nedsättning av arbetsförmågan. Vid uppföljning 2009 arbetade 64% i båda grupperna, varav ungefär hälften på deltid. Under perioden 1983-1997 har verksamhetsgraden bland dem som arbetar i grupp A minskat signifikant, fler arbetade deltid 1997 jämfört med 1983 och i grupp B arbetade signifikant fler deltid 1997 än i grupp A vid samma ålder, 1983. Arbetstillfredsställelsen i båda grupperna har varit hög vid alla mättillfällena. En stor majoritet 2009 var nöjda med stöd från arbetskamrater, stöd från arbetsledare, utmaningar i arbetet, kontroll i arbetssituationen, samspel med arbetskamrater och mål i arbetssituationen. Sammanfattning I de undersökta grupperna minskar under uppföljningstiden andelen personer som arbetar och graden av nedsatt arbetsförmåga ökar bland dem som arbetar. De flesta som arbetar upplever hög grad av arbetstillfredsställelse.
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| 14. |
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| 15. |
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| 16. |
- Törnbom, Marie, 1950, et al.
(författare)
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Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up.
- 2013
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Ingår i: Scandinavian Journal of Disability Research. - 1501-7419 .- 1745-3011. ; 15:3, s. 249-263
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate how symptoms and personal assistance needs change over time among people with cerebral palsy (CP) or meningomye- locele (MMC), and to identify unmet needs. The study design was a longitudinal follow up, both cohorts starting as young adults while treated at the adult habilitation clinic. The participants were interviewed by telephone. 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). Perceived symptoms were aggravated in both groups in 2009 compared with 1997 (8), and significantly more aggravated in group A (older than group B). The number of participants needing practical assistance increased significantly in both groups between 1997 1998 and 2009. Most people in both groups had contact with health care professionals and many wanted more assistance, especially access to a specialized team. As a consequence of aggravating symptoms, the need for specialized health care continues into adulthood.
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| 17. |
- Törnbom, Marie, 1950, et al.
(författare)
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Occupations and means of living in adults with cerebral palsy or meningomyelocele during two decades in Sweden.
- 2011
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 13:1, s. 21-35
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to focus on education, work and means of living during two decades in two groups of people with cerebral palsy (CP) or meningomyelocele (MMC) within the framework of social policies. Two groups of patients at an adult habilitation unit were interviewed by telephone – Group A (n=55) in 1983 and again in 1997 (n=42), and Group B (n=30) in 1997. All but one subject in Group B had attended upper secondary school (1997), compared with 61% in Group A (1983). In 1983, a majority of Group A worked or studied. In 1997, most of them still worked or studied, compared with only two thirds of the 1997 Group B, but both the A and B groups worked part-time significantly more often in 1997 compared with Group A in 1983. Of those who worked, about one third of Group A and more than half of Group B had wage subsidies from the state in both 1983 and 1997. The majority of Group A thought that over the period from 1983–97 the labour market had generally become harder, which had affected people with disabilities in general in a negative way. Almost all in Group A in 1983 and Group B in 1997 were content with their work tasks and work environment, but one third of Group A had problems within these areas in 1997. Significantly more people had disability pensions, of varying amounts, in 1997 (A and B groups) than in Group A 1983. In conclusion, it seems as if social policies have managed to integrate these people into the regular educational systems and support them financially, but have failed to stimulate the labour market to offer them work, especially regular and permanent work without wage subsides.
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| 22. |
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| 23. |
- Törnbom, Marie, 1950, et al.
(författare)
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Work participation among middle-aged persons with cerebral palsy or spina bifida - a longitudinal study
- 2014
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Ingår i: Disability and Health Journal. - : Elsevier BV. - 1936-6574. ; 7:2, s. 251-255
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Tidskriftsartikel (refereegranskat)abstract
- 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 5 55), in 1997 (n 5 42) and in 2009 (n 5 28). Group (B) was studied in 1998 (n 5 30) and in 2009 (n 5 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)e2009, 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.
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