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.