Audults living with Spina bifida - Voices from everyday life and exploration of living conditions

Abstract

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.

Publikationer

Avhandling
Audults living with Spina bifida - Voices from everyday life and exploration of living conditions
Disputation: Örebro Universitet, december 2020.

Artikel 1 
Adults with Spina bifida: A cross-sectional study of health issues and living conditions. Brain and Behavior doi:10.1002/brb3.1736
Bendt, M., Gabrielsson, H., Riedel, D., Hagman, G., Hultling, C., Franzén, E., Eriksson, M. & Seiger, Å.

Artikel 2
Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life
Open Journal of Nursing, 5, 2015, 303-312.
Gabrielsson, H., Karlberg Traav, M. & Cronqvist, A.

Artikel 3
Views on everyday life among adults with spina bifida: an exploration through photovoice.
International Journal of Qualitative Studies on Health and Well-being, november 2020
Gabrielsson, H., Hultling, C., Cronqvist, A. & Asaba, E. 

Photovoice revisited: an analysis of process and methodology.
(In manuscript)
Gabrielsson, H., Cronqvist, A. & Asaba, E. 

Projektpresentationer

Gabrielsson H., Cronqvist A., To become an adult with Spina Bifida, obstacles and opportunities. Second World Congress on Spina Bifida Research and Care, Las Vegas, mars 2012.

Muntlig presentation på Finding our way The 23^rd International Conference for Spina Bifida and Hydrocephalus, Stockholm, juni 2012.

Living and health conditions for adults with Spina Bifida in Sweden – a comprehensive prevalence group study. ISCoS, Sydney, 13-15 september 2018.
Bendt, M., Gabrielsson, H., Riedel, D., Hagman, G., Hultling, C., Franzén, E., Eriksson, M., Seiger, Å. 

Gabrielsson, H., Cronqvist, A., Asaba, E. Views on everyday life among adults with spina bifida: an exploration through photovoice. The 10^th European conference on rare diseases & Orphan products. Online 14-15 May 2020.