Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents

Abstract

Parenting a child with profound intellectual and multiple disabilities has expanded practical and existential implications. This study contributes to understanding parents’ lifeworld and their vulnerabilities by examining the deeper layers of what parents express through their use of images and metaphors. In-depth interviews with 25 Dutch parents were analysed by conducting systematic metaphor analysis informed by metaphor theory. We used the concept of social imaginary to reflect on the sociocultural or collective dimension of parents’ discourse. The following central metaphorical concepts were identified: Stagnation; Labyrinth; Battle; Transition; Medal; and Parallel worlds. Identified images and metaphors revealed an interplay of imaginaries regarding health and normality, autonomy and responsibility and what lives are worth living. Imaginaries may be transformed to frames that are more inclusive to families with children with disabilities. The study supports the demand to create humane care systems that address families’ vulnerabilities.