Abstract
Many clinical trials recruit fewer participants than the original recruitment target and so interest in patient’s perspectives on trial recruitment is increasing as efforts to improve trial participation continue. Studies looking at factors that can influence cancer trial participation have raised several key issues including patient’s views about the trial interventions, the extra time required to attend additional trial appointments, and fears of randomisation. However many of these used quantitative survey methods developed from health professionals’ perspective with little sociological research addressing the patient’s perspective. Qualitative interviews with 9 women, 3 included their husband in the interview, were carried out, in order to discover what key factors influenced their decision. All interviews were transcribed and analysed using a grounded theory approach. By exploring women’s reasons for participating or not in a breast cancer trial, this study gives some insight into the importance of the family members to the women when making what becomes a shared decision about trial participation. The results show that the most important factor that influenced a woman’s decision about trial participation was her family members’ views and opinions. For some women their relatives’ view of whether or not they should participate in the trial was more important than their own. Even if the view was the opposite of their own they would still accept the choice that their family member opted for. Key motivations for trial participation were altruistic and there was a belief that taking part would help future treatments, although this was balanced by the need to avoid personal harm when taking part. There was a lack of understanding relating to the trial process and participation which underpinned some of the women’s decisions. This study shows that a major factor unexposed before is the influence of family, and raises the issue of the importance of the family members in cancer trial decision-making and the need to explore this further to meet patients’ needs. It seems that this has either not been prompted in the structured surveys or not raised. Indeed all the recommendations from the studies looking at barriers to participation (McDaid et al 2006) recommend more information is given to the patients, and yet information does not seem to be the requirement of the patients, but, the need to involve key people in the family in the information giving process may be useful to increase trial participation. This is moving away from physician patient shared decisionmaking into the social arena of the patient and their everyday life, which is where they live with their decisions, therefore involving the key family members better reflects a patients needs and women’s decision making about breast cancer trials enrolment.