Establishing a person-centred framework of self-identity after traumatic brain injury: a grounded theory study to inform measure development

OBJECTIVE: To develop a theoretically sound, client-derived framework to underpin development of a measure reflecting the impact of traumatic brain injury (TBI) on a person's self-identity. DESIGN: Grounded theory, based on transcription of audio recordings from focus group meetings with people who have experienced TBI, analysed with constant comparative methods. SETTING: 8 different urban and rural communities in New Zealand. PARTICIPANTS: 49 people (34 men, 15 women), 6 months to 36 years after mild-to-severe TBI. RESULTS: The central concept emerging from the data was that of desiring to be or having lost a sense of being an integrated and valued person. The three main subthemes were: (1) having a coherent, satisfying and complete sense of oneself, (2) respect, validation and acceptance by others and (3) having a valued place in the world. CONCLUSIONS: This study reinforces the notion that change in self-identity is an important aspect of life after TBI, and provides information on what this concept means to people with TBI. In order to scientifically evaluate relationships between self-identity and other aspects of health (eg, depression, quality of life), and to test the effect of interventions to address problems with self-identity after TBI, a quantitative tool for evaluation of this construct is required. Themes from this research provide a foundation for the development of a measure of self-identity grounded in the language and experience of people with TBI.