Portal de Periódicos da CAPES

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

2020; Taylor & Francis; Volume: 15; Issue: 1 Linguagem: Inglês

10.1080/17482631.2020.1830702

1748-2631

Hanna Gabrielsson, Claes Hultling, Agneta Cronqvist, Eric Asaba,

Children's Rights and Participation

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.