Reciprocity for patients with head and neck cancer participating in an instrument development project.

Abstract

To examine reciprocity (i.e., a mutual exchange of benefit) in study participation via a thematic analysis of field notes on study participation from a parent psychometric study. Qualitative. Head and neck surgery clinic in an urban tertiary hospital. Seven patients with head and neck cancer recruited to participate in an instrument development project. Symbolic interactionism was employed to frame the examination of field notes from observations and interactions with patients, as well as participant notes accompanying returned retest questionnaires. Analysis relied on the constant comparative technique at the levels of open and axial coding. Participation in an instrument development project. Four content themes emerged in the analysis: Willingness to Help, Reassurance That the Deficits Patients Experience Are Common, Participation Provides Social Contact, and Confirmation of Clinically Significant Findings. A process theme, Unveiling the Experience, integrated the content themes in relation to participation itself. The role of the study nurse appears to be pivotal in this process. A notion of reciprocity in research participation is apparent. The role of the study nurse is an important element in the process of reciprocity. This role should be explored to enhance study participation. Implications, particularly for clinical trial nurses, include recasting the benefits of participating in research, better addressing preparation for patients scheduled to receive treatment for head and neck cancer, and exploring and enhancing the role of the study nurse.