Invisible work of using and monitoring knowledge by parents (end-users) of children with chronic conditions

Parents who care for young children with chronic conditions are knowledge users. Their efforts, time, and energy to source, consider and monitor information add to the 'invisible' work of parents in making decisions about care, school transitions, and interventions. Little is known or understood about the work of parents as knowledge users.

To understand the knowledge use patterns and how these patterns may be monitored in parents caring for their young children with cerebral palsy (CP).

An embedded case study methodology was used. In-depth qualitative interviews and visual mapping were employed to collect and analyze data based on the experiences of three mothers of young children with CP.

Knowledge use in parents caring for their young children with CP is multi-factorial, complex and temporal. Findings resulted in a provisional model elaborating on the ways knowledge is used by parents and how it may be monitored.

The visual mapping of pathways and actions of parents as end users makes the processes of knowledge use more visible and open to be valued as well as appreciated by others. The provisional model has implications for knowledge mobilization as a strategy in childhood rehabilitation and the facilitation of knowledge use in the lives of families with children with chronic health conditions.