Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Abstract

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury.

Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1–4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Results: Three main themes emerged during analysis: A new life, Family involvement, and Rehabilitation impediments. These themes and their sub-themes described the patient perspective of TBI and rehabilitation post hospitalization. Participants reassessed their values and found a new life after TBI. Family caregivers negotiated rehabilitation services and helped the participant to overcome barriers to rehabilitation. Although participants were entitled to TBI rehabilitation, they had to fight for the services they were entitled to.

Conclusion: Individuals with TBI found ways of coping after injury and created a meaningful life. Barriers to TBI rehabilitation were overcome with help from family caregivers rather than health care professionals. Future studies need to find ways to ease the burden on family caregivers and pave the way for more accessible rehabilitation in this vulnerable group of patients.

Implications for rehabilitation

• TBI rehabilitation might benefit from:

•    • Increased transparency in rehabilitation options

•    • More systematic follow-up programs

•    • Age-appropriate rehabilitation facilities

•    • Inclusion of patient and family in the planning of long-term rehabilitation

Keywords:

• Healthcare utilization
• family caregiving
• illness trajectory
• rehabilitation
• traumatic brain injury
• qualitative research

Acknowledgements

Special thanks to the participants and their families for sharing their experiences. We would also like to thank leading medical secretary Vibeke Uttenreitter Dahl for her practical help with the study.

Disclosure statement

This study was funded by Rigshospitalet Research Foundation and Helsefonden. The authors report no declaration of interest.

Additional information

Funding

This work was supported by the Rigshospitalet Research Foundation (E-22260-03) and Helsefonden (16-B-0050).