Table 7.

Factors Contributing to Participants’ Perceiving the Research Experience Positively or Negatively^*

Factors Associated with Positive Experiences Close relationships with research staff Study involved learning and was interesting Free health monitoring or treatment Access to study results and publications Feeling valued Treated better (i.e., with more respect and attention) in research Health improved Being tended to (individualized attention) Conquering fear, aversion

Factors Associated with Negative Experiences Pain, extended discomfort Disorganized or unprofessional staff Negative interactions with staff Not receiving clinical test results during the study Risks, side effects (fears or actual) Cancellations, waiting Payment problems Unanticipated aspects of the study (i.e., ‘surprises’) Protocol too demanding Lack of privacy Undue pressure to stay in the study

^*Listed in order of the frequency with which each issue was identified.