Marie Törnbom

Occupations and means of living in adults with cerebral palsy or meningomyelocele during two decades in Sweden

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.

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.

Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

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 meningomyelocele (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...

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 magazines 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.

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.

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.