We Finally Learnt to Demand: Consumers’ Access to Rehabilitation Following Traumatic Brain Injury

Abstract

Clinical care guidelines exist internationally recommending the appropriate standards of care for adults following brain injury. These guidelines recommend a care pathway including acute, inpatient and outpatient rehabilitation and communitybased care. However, if and how these guidelines are implemented is largely unknown. The aim of this study was to explore the recollected continuum of care experienced by 202 adults with moderate to severe traumatic brain injury (TBI) in Victoria, Australia. The experiences of participants in this study were investigated using a mixed methods research approach (surveys and in-depth interviews). The results indicated that only 20% of participants in this study recollected receiving care in line with recommendations made in clinical care guidelines. Reasons they identified for their problematic access to services included: a lack of information about the services available, the absence of an advocate and services being restricted by limited funding. The findings of this study indicate that while guidelines provide recommendations regarding standards of care and can serve as a benchmark to improve the quality of services, they do not ensure the equitable delivery of services. Clinicians using these guidelines need to be aware of the factors that restrict clients' access to services and take these into account when planning the delivery of services.

Team-based rehabilitation after traumatic brain injury: a qualitative synthesis of evidence of experiences of the rehabilitation process

“…The search retrieved 10 studies that met the inclusion criteria. (Table II): 6 from Australia (23)(24)(25)(26)(27)(28), 2 from the UK (29,30), and 2 from Scandinavia (31,32). The studies included a total of 138 persons, of whom 52 were women.…”

“…Being challenged with an increased understanding of the long-term consequences on everyday life following the transition to the home bilitation that was individually tailored and coordinated during all phases of the recovery (23)(24)(25)(26)(27)(28)(29)(30)(31)(32).…”

Traumatic brain injury epidemiology and rehabilitation in Ireland: a protocol paper

“…Evidence suggests that in adults with an acquired brain injury, intensive and early access to neuro-rehabilitation is cost-effective 9,10 and promotes better outcomes 11 . Timely access to acute care services can limit the impact of the primary head injury and its secondary complications, while access to ongoing rehabilitation can maximise functional recovery 12 . The British Society of Rehabilitation Medicine (BSRM) guidelines for the management of rehabilitation following serious injury, propose that the rehabilitation pathway begins in the acute care phase of treatment 13 .…”

“…Difficulties in accessing rehabilitation arise however, where there is a reliance on acute care practitioners to discharge patients to the appropriate clinical services 14 and a lack of organisation and systematic follow up in rehabilitative care 15 . The patient's geographical location, and health systems that require patients to self-advocate, also contribute to the experience of inequitable access to rehabilitation internationally 12 .…”

“…Financial pressures associated with loss of earnings and extra costs, such as housing adaptations and transport, add to the family burden 21 . Findings of international studies indicate that family members often act as advocates and are vital to the long-term rehabilitation of individuals with TBI 12,15 . Furthermore, the availability of an advocate is a significant factor in successfully accessing rehabilitation services 15 .…”