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.


METHODS
Grounded theory, based on transcription of audio recordings from focus group meetings with people who have experienced TBI, analysed with constant comparative methods.


METHODS
8 different urban and rural communities in New Zealand.


METHODS
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.
Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand.
William M M
WM
Levack
Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand.
Pauline
P
Boland
Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand.
William J
WJ
Taylor
Department of Psychology, Faculty of Health and Environmental Sciences, AUT University, Wellington, New Zealand Division of Rehabilitation and Occupation Studies, Person Centred Research Centre, AUT University, Auckland, New Zealand.
Richard J
RJ
Siegert
Division of Rehabilitation and Occupation Studies, Person Centred Research Centre, AUT University, Auckland, New Zealand.
Nicola M
NM
Kayes
Division of Rehabilitation and Occupation Studies, Person Centred Research Centre, AUT University, Auckland, New Zealand.
Joanna K
JK
Fadyl
Division of Rehabilitation and Occupation Studies, Person Centred Research Centre, AUT University, Auckland, New Zealand.
Kathryn M
KM
McPherson
D000328:Adult; D000368:Aged; D001930:Brain Injuries / Q000523:psychology*; D005260:Female; D066296:Grounded Theory; D006801:Humans; D008297:Male; D008875:Middle Aged; D012649:Self Concept; D055815:Young Adult
Lived Experience; Outcome; Qualitative Research; Self-Concept; Self-Identity; Traumatic Brain Injury