Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Abstract

In the context of understanding motivations for clinical research participation, many authors consider issues such as informed consent and how patients perceive the research method and process. However, many investigations focus only on one method of research, most commonly the randomised controlled trial. Understanding how chronically ill members of one specific patient group respond to all requests for research participation are rare. Cystic fibrosis (CF), a genetic condition whereby those affected are used to taking a wide array of treatments and attending a specialist care centre over many years, and are generally knowledgeable about their condition, represents an ideal case for investigating how staff requests for clinical research participation are accepted or declined. Using Bloor's systems of relevance framework for risk behaviour and risk reduction, specialist CF centre patients’ motivations for participation or non-participation in clinical research can be understood. The framework takes into account two sets of conceptual oppositions: habituation and calculation, constraint and volition. These oppositions represent a range along a continuum of risk behaviour rather than being absolute distinctions. Decisions to participate are influenced mainly by the patient's state of health at the time of request, the nature of the trial and the social context within which sufferers are placed. Understanding why chronically ill patients refuse some requests and yet accept others may assist researchers in designing protocols that take these factors into account and achieve the desired numbers of participants whilst protecting those in vulnerable positions.