The legacy of being a research subject: follow-up studies of participants in therapy research.

Abstract

An increase in research activity in physical therapy has led to a parallel increase in the numbers of patients, colleagues and members of the general public being used as subjects. Safeguards on the ethical aspects of research have been monitored through ethics committees whose task is to protect the interests of subjects. However, proposals are subject to ethical scrutiny prior to commencement of the research, before subjects have given consent. It is unusual for further monitoring to take place once the study is underway or, indeed, after it has finished. Few researchers have reported carrying out follow-up studies of their subjects, therefore the ethical effect of research on subjects is not known. Our interest was in reports of subjects who had previously been research subjects. Follow-up studies were carried out on 156 subjects who had participated in research interviews. Phase 1 of the study included subjects with physical disabilities who lived in residential care (Rs subject group) (Barnitt and Canter, 1982). Phase 2 of the study comprised two research projects, (A) and (B), where subjects were physical therapists and occupational therapists (Ts subject group) (Barnitt, 1993; Barnitt and Partridge, 1997). Data were collected from the Rs subject group through visits, whereas the Ts subject group was sent a letter and short questionnaire three months after completion of an interview to elicit their views on the experience. Eighty-seven subjects responded to the approach, a response rate of 56%. Despite having consented to taking part in research, a number of subjects later had concerns about their involvement. These concerns included worries about confidentiality; expectations that had not been met, anger, disappointment, and loss of face. Other subjects reported positive outcomes from the experience. Researchers should consider including subject follow-up in their research design, particularly where sensitive research topics are being studied.