Crafting representations of rare disease: collage as qualitative inquiry.

Background: Collage is a modality of expression which involves repurposing and juxtaposing fragments. Our aim was to explore both how and what collage, as an arts-based research method, might contribute to enlivening understandings of the experiences of families affected by rare conditions.

Methods: During 10 weeks of collaging workshops participants created artistic representations of their experiences. The methodology produced a convivial atmosphere where participants talked openly about everyday challenges.

Results: The collages and conversations produced offer a means through which to consider the complex and multiple positions which families affected by rare disease interpolate. Particularly, the collages prompt cross-cutting thematic reflections on motherhood and care, the challenges of being heard, and balancing family life alongside medicalisation.

Conclusions: The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner.