Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study

Abstract

Most patients and carers struggled to identify a cohesive plan that supported their transition to living in the community. Access to services required much persistence on the part of carers and tended to be short-term, and therefore did not meet their long-term needs. We propose the need for a case manager to be involved at an early stage of their rehabilitation and act as a key point for information and access to on-going rehabilitation and other support services. Implications for Rehabilitation Traumatic Brain Injury (TBI) is a major cause of long-term disability. It can affect all areas of daily life and significantly reduce quality of life for both patient and carer. Professionals appear to underestimate the change in abilities and impact on daily life once patients return home. Community services maintain a short-term focus, whereas patients and carers want to look further ahead - this dissonance adds to anxiety. The study's findings on service fragmentation indicate an urgent need for better integration within health services and across health, social care and voluntary sectors. A link person/case manager who oversees the patient journey from admission onwards would help improve integrated care and ensure the patient, and carer, are at the center of service provision.

We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury

“…In a grounded theory study of ten individuals who had sustained a TBI Nochi (1998) concluded that individuals fundamentally revised their 'self-narrative by changing the appearance of their past and future' (p.1797). More recently Abrahamson et al (2016) interviewed 41 brain injured individuals and their family members and identified a 'disintegration of self-identity' and understanding that life post-injury would be very different. Furthermore, Muenchberger et al (2008) examined identity transition in six individuals with TBI and described TBI as a dynamic journey with a constant interplay between pre-and-post injury comparisons, and while there were negative outcomes there were also positives to be taken from the experience.…”

“…However, only a small number of studies consider how uninjured family members contribute to the understanding of loss and change following TBI (Abrahamson et al, 2016;Couchman et al, 2014). By exploring biographical attendance, disruption, continuity and reconstruction in the context of TBI this study adds to the literature on self-concept by proposing a different way to think about change post-injury.…”

“…Not sharing realities may lead to individuals feeling they are isolated from the rest of the family. (Abrahamson et al, 2016;Kreutzer et al, 2016). Further research is required to understand narrative alignment pre-injury and how families help to preserve, sustain or realign narrative order for the whole family post-injury.…”

“…Subjective experiential changes are increasingly being recognised as important in understanding recovery and rehabilitation following TBI (Abrahamson, Jensen, Springett, & Sakel, 2016;Couchman et al, 2014;Gracey et al, 2008;Muenchberger et al, 2008;Nochi, 1998;Ownsworth & Haslam, 2016). Holloway and Freshwater (2007) argue that in the presence of trauma and illness what had been assumed about our lives and our perception of the future shifts or alters completely: 'individuals find themselves in a process of deconstructing and reconstructing [their] identity' (p706).…”

A Qualitative Study on the Transition Support Needs of Indigenous Australians Following Traumatic Brain Injury

“…The findings suggest the need for a coordinated transition support approach following TBI. A growing number of studies have advocated a case management approach for supporting individuals following TBI (Abrahamson et al, 2017;Turner et al, 2007), with coordinated care models for other conditions, including stroke, showing significant benefits for patients' mental quality of life, depressive symptoms and adherence to self-care practices (Claiborne, 2006). A coordinated service model approach is required to ensure Indigenous patients are able to access and engage with services in a way that takes into account their complex needs following TBI.…”