Adults with Spina bifida : voices from everyday life and exploration of living conditions

Sammanfattning: 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.