Significant others' perspectives on formal supports at 3- and 12-months post-discharge from specialist rehabilitation units following acquired brain injury and spinal cord injury.

Abstract

Purpose: To explore from significant others' perspective the experiences of and barriers to accessing formal supports in the first year post-discharge after acquired brain injury (ABI) and spinal cord injury (SCI).

Methods: Semi-structured interviews were conducted with significant others (family members/friends) of individuals with newly acquired ABI and SCI at 3- (n = 24) and 12-months post-discharge (n = 19) from inpatient rehabilitation in Queensland, Australia. Data were thematically analysed using the Framework method.

Results: Four themes emerged. Theme 1 (Journeying along new and complex pathways) describes participants' experience forging a path through an unknown landscape. Theme 2 (Being on the same page through open and active communication) highlights the impact of communication on the experience of formal supports. Theme 3 (Getting the support right: prioritising the who and how) stresses the importance of formal supports understanding the person with the injury, their interests and needs. Theme 4 (Becoming the safety net) describes the impact on significant others who had to fill the gaps in formal support.

Conclusion: The findings underscore the need to proactively involve significant others as well as people with an injury in the rehabilitation and decision-making process to support the needs and well-being of both parties.