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"Brain Injuries Affect Everything:" Long-Term Caregiver Perspectives on Medical and Educational Needs Following
Jennifer P Lundine1,2, Nicole Viola1, Christine Koterba3
1Department of Speech & Hearing Science, The Ohio State University, Columbus, OH 43210, USA.
Insights
Caregivers of children with traumatic brain injuries (TBI) face overwhelming healthcare systems and shifting responsibilities. They recommend improved support and resources for better pediatric TBI recovery.
Area of Science:
- Pediatric Neurotrauma
- Qualitative Health Research
- Caregiver Support Systems
Background:
- Traumatic brain injury (TBI) in children results in long-term medical and educational challenges.
- Caregiver experiences navigating healthcare and educational systems are critical for pediatric TBI recovery.
- Existing services often fail to meet the comprehensive needs of children with TBI and their families.
Purpose of the Study:
- To explore caregiver experiences with medical and educational supports for children with chronic TBI.
- To gather caregiver recommendations for improving services for young people with TBI.
- To identify system-level gaps from the perspective of those most involved in pediatric TBI recovery.
Main Methods:
- Qualitative study utilizing semi-structured virtual interviews with 19 caregivers of children with TBI.
- Reflexive thematic analysis with an experiential orientation and deductive approach.
- Adherence to Standards for Reporting Qualitative Research (SRQR) guidelines.
Main Results:
- Four key themes emerged: lasting child changes post-TBI, overwhelming healthcare environments, shifted caregiver responsibilities, and persistent school challenges.
- Caregivers identified significant system-level gaps in support, resources, and education.
- Children's age at injury ranged from 2.6 to 18.0 years, with an average of 5.2 years post-injury.
Conclusions:
- Caregiver perspectives are essential for understanding the long-term impact of pediatric TBI.
- There is a critical need for enhanced, targeted support and resources for families navigating pediatric TBI.
- Centering caregiver expertise can inform the development of effective interventions and policies for TBI recovery.
Abstract:
This qualitative study incorporates caregiver perspectives to identify their (1) experiences with medical and educational supports for their children with chronic TBI following inpatient rehabilitation and across the recovery trajectory and (2) recommendations to improve service provision for young people with TBI. Nineteen caregivers of children with complicated-mild-to-severe TBI participated in semi-structured virtual interviews. Participants were from a large Midwestern U.S. city. Researchers used reflexive thematic analysis, incorporating an experiential orientation and a deductive approach. Standards for Reporting Qualitative Research guided this process. Children were an average of 5.2 years post-injury, and age at injury ranged from 2.6 to 18.0 years, providing depth of caregiver experiences discussed in interviews. Four primary themes were identified: (1) TBI leads to lasting changes in the child, (2) the healthcare environment is overwhelming, (3) TBI forces a shift in caregiver responsibilities, and (4) school challenges persist over time. Caregivers generated concrete, experience-based recommendations, highlighting the need for increased support, resources, and education in specific areas following pediatric TBI. By centering caregiver voices across recovery, this study underscores their unique expertise in identifying system-level gaps and informing the development of interventions, services, and policies that better support children with TBI and their families over time.
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