Parental concerns and distress after paediatric traumatic brain injury: a qualitative study
George P Prigatano1, Jennifer A Gray
1Division of Neurology, Barrow Neurological Institute, St. Joseph's Hospital and Medical Center, Phoenix, Arizona 85013, USA. gprigat@chw.edu
Insights
Parents of children with traumatic brain injury (TBI) experience high distress, primarily due to concerns about school, social interaction, behavior, and future consequences. Addressing these parental worries is key for better rehabilitation engagement.
Area of Science:
- Pediatric Neurosciences
- Child Psychology
- Rehabilitation Medicine
Background:
- Traumatic brain injury (TBI) in children presents unique challenges for families.
- Parental distress is a significant factor impacting caregiving and child outcomes.
- Understanding parental concerns is crucial for effective TBI management.
Purpose of the Study:
- To identify parental concerns associated with high distress levels in caring for children with TBI.
- To explore the relationship between parental distress and TBI severity.
Main Methods:
- A hospital-based study involving 100 school-aged children (81 with TBI, 19 controls).
- Collected verbatim parental concerns using the Child Behaviour Checklist (CBCL).
- Assessed parental distress levels and correlated them with TBI severity.
Main Results:
- High parental distress was linked to concerns about school performance, social difficulties, emotional dysregulation (anger, apathy), and fear of future TBI consequences.
- Parental distress showed a weak but significant correlation with TBI severity (r = +0.26).
- Severe parental distress was reported across all TBI severity levels.
Conclusions:
- Parental distress in TBI caregiving is prevalent regardless of injury severity.
- Addressing parental concerns is vital to enhance their involvement in the child's rehabilitation process.
- Future interventions should focus on mitigating parental distress and associated concerns.
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.
