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

Youth soccer player with injured knee

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. the objective of this study was 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.


Published by


My interest in health and fitness started at a young age. Even though I had been educated and trained as an engineer in Europe I always want to follow my passion. I have made some guest appearances on a health educational program TV in Europe and, this experience, has made me follow my passion of sharing wellness information with others.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s