Faith and religion as a "resource of meaning" in the care of rare disease

In the management of both ordinary and extraordinary events, religions act as “systems of meaning” offering cognitive, motivational, affective, as well as narrative resources, helping persons to give order to reality. Indeed, the stories enable to (re)think and (re)build events, in order to give a (new) perspective about life, especially when life is threatened by illness. Among diseases, rare ones represent a really complicated situation, being both subjective projects and personal/social identity seriously threatened. As a consequence, persons and primary caregivers suffering with it are called to find new ways toward “normalization”, in the effort to construct new certainties and meanings about the personal condition, the family situation and the parental identity. This work aims at investigating the role of the religiosity in facing with the intense existential uncertainty offered by rare disease. Forty-four narrative interviews were conducted to parents of children suffering of rare disease and analyzed through discourse analysis. Socio-epistemic rhetoric, metaphors, emotional markers, certainty/uncertainty markers are the interpretative lens that allowed us to understand the power of religion to offer several and specific meanings in the couple, fluctuating from a painful upheaval and attitudes of hope.