Putting the person in person-centered care: Stakeholder experiences in pediatric traumatic brain injury

PURPOSE: This pilot study sought to describe the perspectives and experiences of survivors of pediatric traumatic brain injury (pTBI), their caregivers, and the medical professionals who serve them. METHODS: Thirteen people participated in semi-structured interviews: five survivors of pTBI, their primary caregivers, and three medical professionals who work with persons who have sustained pTBI. The study involved a prospective, qualitative, participatory action research model with convenience sampling. All interviews were transcribed and thematic analysis identified central concepts within and between groups. Additionally, the Consolidated Criteria for Reporting Qualitative Research (COREG) were applied. RESULTS: This study found that survivors of pTBI and their caregivers commonly noted later developing issues, social challenges, and difficulty in post-rehabilitation transitions. In addition, both caregivers and medical professionals reported the need for improved follow-up with survivors, evidence-based research, and medical and therapy providers with specific training on pTBI. CONCLUSIONS: The perspectives provided by key stakeholders in this pilot study identify common themes that should be central to driving innovation in rehabilitation research and clinical care.