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

POINTS OF INTERESTThis study explored the metaphors and images used by parents caring for children with profound intellectual and multiple disabilities when telling about their experiences. This was done to better understand what people convey through the words they use.The identified images and metaphors indicated that parents are affected by societal views about what is healthy and normal, about autonomy and responsibility, and of what makes lives worth living.Awareness of how societal views are embedded in healthcare policies and practices can change the day-to-day experiences of parents.More diverse views about how people and families can be may contribute to the inclusion of families in society and better access to the resources needed to manage family life.The findings accentuated that autonomy and responsibility have many relational aspects. Healthcare services should acknowledge this and enable parents to combine optimal care for the child with the achievement of other ambitions in life. 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.