To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness.
A longitudinal qualitative descriptive study across all TBI severities.
Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI.
Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery.
Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process.
Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the person's story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.
The Health Research Council of New Zealand, Auckland, New Zealand (Dr McPherson); Centre for Person Centred Research, AUT University, Auckland, New Zealand (Drs McPherson, Fadyl, and Kayes and Mrs Channon); Centre for Person Centred Research, National Institute for Stroke and Applied Neuroscience, AUT University, Auckland, New Zealand (DrTheadom); University of Otago, Wellington, New Zealand (Dr Levack); School of Psychology, The University of Waikato, Hamilton, New Zealand (Dr Starkey); and School of Population Health The University of Auckland, Auckland, New Zealand (Dr Wilkinson-Meyers).
Corresponding Author: Kathryn McPherson, Health Research Council of New Zealand, 110 Stanley St, Auckland 1010 (email@example.com).
Community Advisory Group: TBI Experiences Research Group: Valery Feigin, PhD; Suzanne Barker-Collo, PhD; Matire Harwood, PhD; Suzanne Mudge; Grant Christie, MBChB; and Stephen Jenkins.
Funding for the research was provided by the Health Research Council of New Zealand. The authors thank the participants for their time and energy in sharing their experiences. Input into design or processes during the project was offered by numerous colleagues in addition to those named above including Kay Shannon, Kirsten Thomas, Dawn Willix-Payne, Claire Townson, Elisa Lavelle, Margaret Dudley, and Thivasha Naidoo-Melis. The authors particularly thank the organizations that facilitated participant recruitment, and the community reference group (Stephen Jenkins, Matire Harwood, Alison Forster, and Suzanne Mudge). Greta Smith contributed financial management, data modeling, and administrative support. The authors thank the members of the Centre for Person Centred Research of AUT who contributed feedback during the study on emerging findings.
Professor Kathryn McPherson became the Chief Executive of the Health Research Council three years after this study was funded. The other authors declare no conflicts of interest.