“It’s been a long hard road”: challenges faced in the first three years following traumatic brain injury

Abstract

Purpose

There is limited qualitative research exploring challenges experienced following severe traumatic brain injury (TBI). We investigated challenges to recovery identified by individuals who sustained severe TBI three years earlier or their close others (COs), as well as suggestions for managing these challenges.

Materials and methods

Nine participants with TBI and 16 COs completed semi-structured interviews. Using reflexive thematic analysis, challenges were identified across several timeframes (i.e., at the injury, acute care, inpatient rehabilitation, outpatient rehabilitation, and at home/other location).

Results

Challenges experienced across all timeframes included: lack of information and poor communication, pre-existing conditions, missed injuries, and issues with medical staff, and continuity of care. From acute care onwards, there were TBI-related consequences, issues with coping and emotional adjustment, negative outlook, insufficient treatment, lack of support for COs, and issues with compensation and funding for rehabilitation needs. Some challenges were unique to a specific timeframe (e.g., over-stimulating ward setting during acute care, and limited or unsupportive families once injured individuals went home). Suggestions for managing some of the challenges were provided (e.g., information provision, having peer supports).

Conclusion

Suggestions should be considered to promote successful outcomes following severe TBI.

IMPLICATIONS FOR REHABILITATION

• Recovery following a severe traumatic brain injury can be hindered by challenges, such as poor communication, limited information provision, injury-related consequences, limited services and emotional support for the injured individual and their Close Others, and a need for education of the broader community about traumatic brain injury.

• Suggestions for managing these challenges (e.g., peer supports; services closer to home) could be used to inform clinical guidelines that could be used in a rehabilitation context.

• These suggestions ultimately aim to improve the post-injury experience and outcomes of individuals with traumatic brain injury and their Close Others.

Keywords:

• Traumatic brain injury
• qualitative study
• challenges
• recovery
• outcome

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This project was funded by the Australian Government’s National Health and Medical Research Council (GNT1061786). The Victorian State Trauma Registry (VSTR) is funded by the Department of Health, State Government of Victoria and Transport Accident Commission. BG was supported by a Future Fellowship from the Australian Research Council and PC by a NHMRC Practitioner Fellowship.