Parental concerns and distress after paediatric traumatic brain injury: A qualitative study

Abstract

Objective: To determine concerns of parents associated with high distress levels in the care of children with traumatic brain injury (TBI).

Setting and participants: Primary care hospital/medical centre-based study on parental perspectives following TBI in school age children (n = 100; 19 orthopaedic trauma controls and 81 children with a history of TBI).

Main outcome measures: Verbatim reports regarding major concerns on the Child Behaviour Checklist (CBCL), as well as parental ratings regarding their overall distress level when caring for the child.

Results: Summary of verbatim comments indicated that parents who report high levels of distress in the care of their children were specifically concerned about the child's poor school performance, lack of friends, inability to control angry feelings and apathy. Fear of the future consequences of the TBI was also cited as a major concern. Parent ratings of distress level was significantly, but weakly correlated with the severity of TBI in their children (r = +0.26, n = 94, p = 0.01).

Conclusion: Reports of severe distress in the care of TBI children by parents are seen at all levels of severity of TBI. Addressing these parental concerns may increase parental engagement in the rehabilitation process.

• Child
• traumatic brain injury
• parental distress
• recovery
• social integration