Exploring participant experiences of research after traumatic brain injury.
OBJECTIVE
To explore peoples' perceptions and experiences of taking part in research following a traumatic brain injury (TBI) and identify the factors that influence research participation.


METHODS
A total of 30 people (15 who had participated in research following a TBI and 15 who had previously declined or not been offered the opportunity to take part), were asked about their perceptions and experiences of research in a semi-structured qualitative interview. Audio recordings of the interviews were transcribed verbatim and analysed using the qualitative description approach.


RESULTS
Participants perceptions and experiences of research were strongly influenced by the researcher, the practicalities of taking part, including the timing and relevance of research, and perceived end results, such as access to a new treatment or reimbursement for their time.


CONCLUSIONS
People want to be empowered to make their own decisions about research participation following a TBI. The findings have implications for research procedures and researchers working in the field of brain injury and recommendations to enhance the research experience are proposed.
Person Centred Research Centre, School of Rehabilitation and Occupation Studies, Auckland University of Technology , Auckland , New Zealand .
Alice
A
Theadom
Joanna
J
Fadyl
Tania
T
Hollands
Allison
A
Foster
Kathryn M
KM
McPherson
D000293:Adolescent; D000328:Adult; D001930:Brain Injuries / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D018579:Patient Selection; D036301:Qualitative Research; D035842:Research Subjects / Q000523:psychology / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires
Experience; participation; qualitative; researcher–subject relations; traumatic brain injury