Views on everyday life among adults with spina bifida: an exploration through photovoice

ABSTRACT

The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, “an adaptation for us, but it works for no one”. Findings are presented as: “Accessibility—a never-ending project,” “Tensions of a normative view,” and “Power to influence.” Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.

KEYWORDS:

• Spina bifida
• adults
• photovoice
• community-based participatory research

Acknowledgements

We would like to thank the members of the group for actively participating and sharing insights from their everyday life. Also, we would like to extend our thanks to: Dorothee Riedel, for invaluable efforts in making this project run smoothly; Åke Seiger and Mats Eriksson, for comments on the manuscript; and Rehab Station Stockholm and Spinalis Foundation, for providing a room and coffee (fika). The authors would further like to thank the Caroline Montgomery Foundation, Ersta Sköndal Bräcke University College and the Foundation of Linnéa and Josef Carlsson for their financial support of this study.

Disclosure statement

The Authors declares that there is no conflict of interests.

Additional information

Notes on contributors

Hanna Gabrielsson

Hanna Gabrielsson, M.Sc. is a registered nurse and currently PhD candidate at Örebro University, faculty of medicine and health, School of health sciences. Hanna has a clinical background at the Spinalis Spinal Cord Injury outpatient unit at RehabStation Stockholm, and is a lecturer at Ersta Sköndal Bräcke University College, at the department of health care sciences.

Claes Hultling

Claes Hultling, M.D., Ph.D., Professor is an attending physician at Karolinska University Hospital in the practice area of spinal cord injury rehabilitation. He Founded the Spinalis Foundation and Spinalis SCI outpatient unit and is an active researcher at Karolinska Institutet.

Agneta Cronqvist

Agneta Cronqvist, R.N., Ph.D. is a research emerita at Ersta Sköndal Bräcke University College. Agneta is mainly interested in research and methods that contribute to caring science but also have an interest in research aiming at developing nursing profession.

Eric Asaba

Eric Asaba, Ph.D., OTR is Associate Professor in Occupational Therapy at Karolinska Institutet in Sweden. Eric is interested in concepts and methods related to participation and inclusion for people who risk marginalization. Eric has utilized photovoice methods in several projects during the last 10 years.