As an outcome of a workshop held at NoSCos in Stockholm 2022, a special interest group for people living with Spina Bifida has been established. Representatives from Norway, Denmark, Sweden and Australia are part of this special interest group who arrange this workshop. Since people living with Spina Bifida face many challenges in life in general and in receiving timely access to specialist care and follow-up specifically, this workshop aims at gathering information on existing models of care and guidelines. Another goal is to identify existing and possible development- and research projects and elaborate on possible collaborations, as well as identify existing networks in the Nordic region focusing on people living with spina bifida. The special interest group originate from both pediatric and adult units. The workshop will start with a session, where current and local management guidelines and follow-up arrangements in pediatric and adult services in each country are presented briefly. Thereafter small group discussions, including participation of the audience, will be held in groups formed according to interest in pediatric or adult issues. The group discussions will be documented in a digital platform, like for example miro or padlet. The workshop will finish with a panel discussion guided by the identified commonalities and differences in both groups, using the digital platform as a guide. One important issue to focus on is discussion of the complexity of transition from pediatric to adult life.

For individuals with a considerable disability because of Spinal cord injury (SCI), entitlement to personal assistance provided through the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS) is a prerequisite for enjoying equal rights to live in the community, including full participation. The LSS Act previously positioned Sweden as a leading country regarding independent living for persons with disabilities. However, recent austerity measures and unequal access have raised concerns.

In line with the convention on the rights of persons with disability and the LSS Act, disabled persons have become an integral part of the social debate, advocating for equal conditions and inclusion in decisions that impact their lives. Voicing individual and collective experiences is also critical in research and the development of healthcare practice.

This workshop will present a participatory research project using photovoice. The project aimed to explore the experiences of living and operating on terms equal to others with the support of personal assistance after SCI, and how these experiences relate to social norms and societal context. Photographs and narratives from the project will serve as triggers for dialogue, and interactive methods will be used to facilitate the exchange between participants. The following topics will be in focus: Experiences regarding personal assistance support after SCI in the Nordic countries. Experiences of rehabilitation support concerning participation in everyday life for individuals entitled to personal assistance. Actions needed to promote equal participation in everyday life for individuals entitled to personal assistants after SCI?

The aim of this presentation is to explore how dialogue can be methodologically understood in photovoice research – particularly in the context of disability research. This can be relevant because photovoice has gained visibility as a relevant approach to engage community members as partners in disability research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised about how this impacts the theoretical and methodological underpinnings on which photovoice rests.

Drawing on two empirical studies, the authors reflect on the function and meaning of dialogue, and how this can take different forms within the context of disability research. Examples will include: 1) everyday life experiences of migration and disability from an intersectional perspective drawing on issues such as gender, class, and ethnicity, and 2) everyday life experiences of adults living with spina bifida. It will be argued that the potentiality of dialogue warrants certain reflection to support conditions for participation in disability research. Unpacking the concept of dialogue using potentiality, provides an arena for discussion that has not previously been explicit in photovoice.

En avslutad cancerbehandling innebär inte automatiskt ett avslut på de utmaningar som följer med cancer. Behovet av cancerrehabilitering ökar i takt med fler som överlever cancer. Det råder viss otydlighet kring vilka rehabiliteringsinsatser som efterfrågas och vilka aktörer som erbjuder dessa. Denna studie har genom en litteraturöversikt satt ljuset på deltagares erfarenheter av cancerrehabilitering samt civilsamhällets roll i rehabilitering efter genomgången cancer i de nordiska länderna. Resultatet av litteraturöversikten visar att få studier finns publicerade om civilsamhällets roll i cancerrehabilitering. Personer som har genomgått en cancersjukdom har ofta behov av stöd under sin rehabilitering, där stöd från personer i liknande situation uppskattas av många. Resultatet visar även att organisationer i civilsamhället spelar en betydande roll. Studien har genomförts vid Centrum för civilsamhällesforskning, Marie Cederschiöld Högskola.

A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

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.

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.

Under covid-19-pandemin, skedde stora förändringar i svenska samhället, förändringar som även påverkade de patientorganisationer som företräder personer med extra utsatt risk vid smitta. Patientorganisationer har en roll i utformningen av svensk sjukvårdspolitik, utöver att även fungera som en servicefunktion för sina medlemmar. Det har dock diskuterats vilken förmåga patientorganisationerna har att anpassa sig efter förändringar i samhället. Den akuta inledande fasen av covid-19-pandemin har studerats i denna studie och hur pandemin påverkat patientorganisationers relation till medlemmar, andra aktörer och stat. Ledande representanter för fem patientorganisationer som företräder personer i riskgrupp för covid-19 intervjuades. Studien visar att patientorganisationer var snabba med att göra omstruktureringar i organisationen för att möta nya akuta behov. Bland annat skapades nya aktiviteter för medlemmar, stadgar ändrades och samarbetskanaler med andra organisationer intensifierades för politisk påverkan.

During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

Ömsesidiga hjälporganisationer i det svenska civilsamhället står för ett omfattande socialt stöd samt påverkansarbete till förmån för sina medlemmar. Som en följd av Folkhälsomyndighetens rekommendationer i samband med covid-19 pandemin, om social distansering för att förebygga smittspridning och att skydda personer i riskgrupper, har dessa organisationer behövt ändra sitt arbetssätt drastiskt. Syftet med denna studie var att studera hur ömsesidiga hjälporganisationer fungerade under covid-19 pandemin och spegla resultatet utifrån begreppet resiliens. Digitala intervjuer med nio representanter för ömsesidiga hjälporganisationer utfördes. Resultatet visar att det trots ändrade förutsättningar, fanns ett fortsatt stort engagemang och en vilja att fortsätta hjälpa och stödja sina medlemmar. Organisationerna visade kreativ problemlösningsförmåga och lyckades inom kort tid anpassa sina kontakter med medlemmarna till digitala alternativ eller andra innovativa lösningar. Resultatet diskuteras utifrån begreppet resiliens, och dess betydelse på både individ- och samhällsnivå.

Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

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.

The overall aim of this thesis was to generate knowledge about living with Spina bifida, by mapping the condition and together with the adults with Spina bifida explore their living conditions and experiences in everyday life. Methods Study I was a quantitative study with a cross-sectional design. In Study II, individual experiences of daily life were explored by deep interviews using a reflective lifeworld approach. Study III had a participatory approach including five members of a photovoice group who met for eight sessions. Photographs taken by the members served as a starting point for the dialogue about what was of interest in their daily life. A narrative analysis was conducted by the researchers, incorporating the analysis the group did together. Study IV focused on alignment with the methodology in which photovoice is grounded. By returning to the ideological cornerstones of photovoice, the empirical experiences from Study III and examples from the literature were elaborated through processes within photovoice. The findings show that those adults with Spina bifida who were >46 years old had less complex medical conditions and better physical and cognitive functions, and had attained a higher level of education. The main theme in Study II was presented as “The contradictory path towards wellbeing in daily life.” In Study III, the members’ experiences in everyday life showed that many solutions offered by society were “An adaptation for us, but it works for no one.” The findings are further presented under three themes: “Accessibility – a never-ending project,” “Tensions of a normative view” and “Power to influence.” By focusing on action and narrative in Study IV, it is shown that dialogue, action, and interaction are important aspects of using photovoice. In conclusion, not all adult persons receive the support they need in everyday life, something future generations of adult persons with Spina bifida may have a higher need for. The stories and experiences of adults with Spina bifida in this thesis paint a history of not being asked, concerning their own situation. This shows that there is insufficient integration of the persons’ experiences in society’s efforts to plan for, and support, these individuals. The photovoice method was feasible for this group, providing opportunity for being part of dialogue, action, and interaction.