Caregivers' confidence in and preferences for reporting rehabilitation service use following paediatric traumatic brain injury: a qualitative study for measure development.

OBJECTIVES

To evaluate caregivers' confidence in accurately reporting rehabilitation service use for paediatric traumatic brain injury (TBI) and to determine their preferences for measure scope, granularity and administration.

DESIGN

This qualitative descriptive study conducted remote, semistructured individual interviews with caregivers to examine their confidence in and preferences for reporting rehabilitation service use to inform measure development. The interview guide was refined through pilot interviews (n=2) excluded from analysis. Subsequent interviews were transcribed verbatim and analysed using thematic analysis with hybrid deductive-inductive coding.

SETTING

Health Insurance Portability and Accountability Act (HIPAA)-compliant videoconference platform.

PARTICIPANTS

Participants were recruited using maximum variation sampling to promote diversity across factors associated with rehabilitation service use. 14 caregivers met the following inclusion criteria and consented to participate: primary caregiver of a child aged 0-18 years who sustained a TBI requiring hospitalisation within the past 3 years; caregiver communicates in English. Sampling continued until data saturation was reached.

RESULTS

Three themes pertaining to the study objectives were identified: (1) Caregivers are confident in their ability to accurately report their child's rehabilitation service use and satisfaction by setting with approximate dosage; (2) Caregivers' confidence in their ability to accurately report service use varies by setting and (3) Caregivers endorsed completing a comprehensive measure of rehabilitation service use with embedded definitions and structured prompts and preferred electronic administration for remote completion.

CONCLUSIONS

Findings support the acceptability and potential feasibility of a caregiver-report measure of rehabilitation service use across the care continuum following their child's TBI. Next steps will include prototyping the Rehabilitation Use Measure and iteratively refining it through expert feedback and cognitive interviews with caregivers.