Rehabilitation access for individuals with cognitive‐communication challenges after traumatic brain injury: A co‐design study with persons with lived experience

Abstract

ABSTRACTBackgroundAdults with traumatic brain injuries (TBI) frequently experience cognitive, emotional, physical and communication deficits that require long‐term rehabilitation and community support. Although access to rehabilitation services is linked to positive outcomes, there can be barriers to accessing community rehabilitation related to system navigation, referral processes, funding, resource allocation and communications required to ensure access.AimsThis study aimed to identify barriers to accessing insurer funding for rehabilitation and healthcare services, for adults with TBI injured in motor vehicle collisions (MVCs).MethodsWe used a co‐design approach to collaborate with persons with lived experience to design a survey of adults who sustained a TBI in an MVC. The survey examined access to insurer funding for rehabilitation services and was disseminated through brain injury networks in Ontario, Canada.ResultsRespondents (n = 148) identified multiple barriers to accessing rehabilitation services through insurer funding, including delays of more than 2 years (49%), mandatory duplicative assessments (64%) and invasion of privacy (55%). Speech‐language therapy and neuropsychological services were denied most frequently. Negative experiences included insurers’ poor understanding of TBI symptoms, denials of services despite medical evidence demonstrating need and unsupportive insurer interactions. Although 70% of respondents reported cognitive‐communication difficulties, accommodations were rarely provided. Respondents identified supports that would improve insurer and healthcare communications and rehabilitation access.Conclusion & ImplicationsThe insurance claims process had many barriers for adults with TBI, limiting their access to rehabilitation services. Barriers were exacerbated by communication deficits. These findings indicate a role for Speech‐language therapists in education, advocacy and communication supports during the insurance process specifically as well as rehabilitation access processes in general.WHAT THIS PAPER ADDSWhat is already known on this subject There is extensive documentation of the long‐term rehabilitation needs of individuals with traumatic brain injury (TBI) and their challenges in accessing rehabilitation services over the long term. It is also well known that many individuals with TBI have cognitive and communication deficits that affect their interactions in the community, including with healthcare providers, and that SLTs can train communication partners to provide communication supports to individuals with TBI in these communication contexts.What this study adds This study adds important information about barriers to accessing rehabilitation, including barriers to accessing SLT services in the community. We asked individuals with TBI about challenges to accessing auto insurance funding for private community services, and their responses illustrate the broader challenges individuals with TBI face in communicating their deficits, conveying service needs, educating and convincing service administrators and self‐advocating. The results also highlight the critical role that communication plays in healthcare access interactions, from completing forms to reviewing reports and funding decisions, to managing telephone calls, writing emails and explaining to assessors.What are the clinical implications of this work? This study shows the lived experience of individuals with TBI in overcoming barriers to accessing community rehabilitation. The results show that best practices in intervention should include evaluating rehabilitation access, which is a critical step in patient‐centred care. Evaluation of rehabilitation access includes evaluating referral and navigation, resource allocation and healthcare communications, and ensuring accountability at each step, regardless of model of service delivery or funding source. Finally, these findings show the critical role of speech‐language therapists in educating, advocating and supporting communications with funding sources, administrators and other healthcare providers.