Caregiver confidence in and preferences for a self-report measure of their child’s rehabilitation service use following traumatic brain injury: A qualitative descriptive study

Research Objectives: To determine optimal scope, granularity, and administration of a caregiver-reported measure of their child's rehabilitation service use following pediatric traumatic brain injury (TBI).

Design: Qualitative descriptive study.

Setting: Community.

Participants: Using maximum variability sampling strategy we recruited a diverse sample of participants through trauma registries and brain injury follow-up clinics across the United States. Participants were caregivers of children aged 0-18 years who sustained a complicated mild to severe TBI within < 4 years. Caregivers < 18 years or non-English speaking were excluded.

Interventions: Not applicable.

Main Outcome Measures: Themes pertaining to dimensions of rehabilitation service use caregivers were confident they could accurately report, factors impacting confidence, and preference for measure administration were identified via thematic analysis of semi-structure, individual interviews.

Results: Saturation was achieved according to a prior criteria after completing 14 interviews. Participants primarily lived in metropolitan areas (79%), but varied in time since injury, TBI severity, child age, and caregiver gender and education. Thematic analysis yielded the following findings: 1. Caregivers can confidently report settings where rehabilitation services occurred (i.e., yes/no any services) with approximate dosage (frequency, duration, and amount), as well as if/how families were engaged and their satisfaction with services; 2. Caregivers were most confident reporting on outpatient/community settings and least confident reporting on the school setting; and 3. Differentiating service types (e.g., occupational versus physical therapy) is the service use dimension caregivers were least confident reporting. Caregivers largely recommended electronic, asynchronous measure administration, however, several noted their understanding of rehabilitation and confidence reporting improved throughout the interview process.

Conclusions: Caregivers are willing and confident in their ability to complete a rehabilitation service use measure, depending on the specificity of the measure. Though differentiating types of services is difficult, caregivers were able to provide otherwise detailed reports of service use across the continuum of care up to 3 years post-injury. Next steps will include prototyping and psychometric evaluation to determine reliability and validity of a caregiver-reported measure of rehabilitation service use.

Author(s) Disclosures: R03HD101746 (Treble-Barna and Terhorst), K01HD097030 (Treble-Barna), K23HD106011 (Jarvis)