Perceptions of post-TBI healthcare experiences by individuals with traumatic brain injury

Abstract

Purpose: The purpose of this study was to investigate the healthcare perceptions for individuals with traumatic brain injury (TBI) across the continuum of care, including during the acute, transitional, and chronic phases of recovery. While previous researchers have investigated perceptions of individuals with TBI in the acute and transitional phase, there is a paucity of research specifically evaluating the chronic phase of recovery (Manskow et al., 2018; Turner, Fleming, Ownsworth, & Cornwell, 2008). These perceptions are especially critical to evaluate given prior research indicating personal attitudes may have the potential to impact functional outcomes (Sherer et al., 2014).

Methods: This was a two-part study consisting of an online Qualtrics-based survey and follow-up qualitative interviews. Part one: Sixty-four participants with TBI were recruited from community-based brain injury groups for the survey portion. Out of 818 community-group leaders who received invitations, 74 responded and distributed surveys to their groups. Eleven online Facebook group administrators were contacted but only one responded, agreeing to post to their 29,000 member site. The online survey included questions related to demographics, perceptions of healthcare, follow-up services, and satisfaction with service delivery. Perceptions of healthcare experiences were measured through a modified Consultation and Relational Empathy (CARE) measure (Mercer, Maxwell, Heaney, & Watt, 2004), the modified CARE questionnaire for persons with TBI (mCARE-TBI; Spreitzer & Hoepner, 2019). Content validity of the mCARE-TBI was addressed by a panel of experts in TBI rehabilitation and scale development, while face validity was addressed through a pilot focus group of individuals with TBI. After completing the survey, participants were given the opportunity to engage in a qualitative interview. Part two: of the investigation followed an interpretive phenomenological approach to capture in-depth healthcare perceptions and experiences of five individuals recovering from mild TBIs.

Results: The survey provided a great deal of demographic information, including severity of TBI, length of stay and rehabilitation, post-TBI employment, and other racial/cultural demographics. The mCARE-TBI indicated that most participants (70% and 73% respectively) perceived overall quality of care in the acute and transitional phases was good or very good. Conversely, only 48% perceived chronic care as good or very good. Similarly, healthcare providers (OT, PT, SLP, nurses, physicians) were mostly rated good to very good in acute care (75%), compared with about 50% or slightly higher in rehab. The greatest concerns during the rehab phase was a lack of clarity regarding discharge planning. Specific provider interactional skills were implicated in the greatest concerns across providers. These included listening skills, demonstration of care and compassion, having a positive approach and attitude, acknowledging and validating consequences of TBI, providing information and treating symptoms, and collaborating on treatment planning and goal setting. Qualitative analyses of open-ended survey responses revealed three main positive perceptions and three main negative concerns across phases of recovery. Positive perceptions included interactional skills of providers, specific supports provided, and effective collaboration. Negative concerns included problematic interactions, failure to provide specific supports, and limitations to services. Phenomenological findings from the qualitative interviews provide insights into the experience of living with a mild TBI. Along with case reports, core themes across participants included a frustrating and exasperating experience, concerns with referrals, availability, and following up with providers, limited information received about brain injury and what to expect, and specifics regarding recovery continuum. Detailed storylines emerged from phenomenological analyses that provide key insights into refining care processes.

Conclusions: Individuals with TBI identify both positive and negative perceptions of their healthcare experiences, which may help healthcare providers to better meet the needs of individuals with TBI in the future. The interactional skills of providers were identified as crucial to effective care. Training specific communication and interactional skills to providers is an important step towards better service delivery. Specific knowledge of TBI and specialized services are critical for supporting individuals with TBI. In the present investigation, those participants who had more access to specialized care reported more positive perceptions of healthcare provision across all phases of the recovery continuum. More specialized knowledge may also decrease incidence of dismissing symptoms or discounting an individual with TBI’s thoughts on treatment. Promoting service access through referrals, clear discharge planning and communication, information about resources and services such as community programs and support groups, and coordinated care were all identified as important steps by individuals with TBI. All providers may improve in explaining things clearly upon discharge, involving family in care, and collaborating with the patient in the treatment plan.