Objective To describe health issues and living conditions in a cohort of adults living with Spina bifida. Material and methods A cross‐sectional study was conducted by a multidisciplinary team. Adults with spina bifida ( n = 219) were invited to participate. One‐hundred‐and‐ninety‐six persons (104 women and 92 men; 18–73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used. Results There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals > 46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function. Conclusions This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow‐up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow‐up services and social support throughout life.
This article draws on empirically derived illustrations of return to work and unemployment to critically explore how a narrow understanding of work pervades contemporary social policies and programmes. This is particularly relevant in economic and labour market transitions aligned with neoliberalism that individualise the social problem of unemployment and thus restrict occupational possibilities related to work. An overview of how work and related concepts have been conceptualised in occupational science scholarship is presented. After describing the theoretical orientation of the paper, three illustrations derived from a secondary analysis of data from projects conducted in Sweden and the United States are presented. The three empirically grounded illustrations are integrated with theory to highlight tensions between the politically informed structures that shape social policies and programmes and the individual experiences of work, unemployment, and return to work that users and providers of these programmes communicate. By asserting that success in work-related placement programmes is not synonymous with meaningful employment, we attempt to heighten awareness of the potential risks associated with a reliance on measuring work by merely being in paid formal employment.
Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.
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