Experiences of care: Perspectives of carers of adults with traumatic brain injury

Abstract

This paper describes the results of a survey that explored the experiences of carers when accessing rehabilitative services alongside their family member with a moderate–severe TBI. The 184 carers who completed these surveys reflected retrospectively on the care they received. The results of this study indicated that 61% of the carer respondents recollected accessing inpatient rehabilitation following their acute care. However, following inpatient discharge only 33% of carers reported receiving ongoing services. One quarter of carers stated they received inadequate information while transitioning through their healthcare journey and fewer than 20% of carers recollected receiving any formal support service. The results of this study showed that as carers transitioned through the healthcare journey with their family member with TBI, health services progressively declined. As this occurred, carers' satisfaction with services reduced, while their responsibilities for caring increased. This trend is concerning given the needs of carers have been shown to change over time and increase if not addressed. This paper describes both carer experience following TBI in Australia and encourages clinicians to advocate for carers needs when planning and providing rehabilitation services.

Keywords:

• Traumatic brain injury
• family members
• survey methodology
• healthcare journey
• experiences
• carers
• continuum of care