Reciprocity for Patients With Head and Neck Cancer Participating in an Instrument Development Project
Purpose/Objectives: 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.
Setting: Head and neck surgery clinic in an urban tertiary hospital.
Sample: Seven patients with head and neck cancer recruited to participate in an instrument development project.
Methods: 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.
Main Research Variables: Participation in an instrument development project.
Findings: 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.
Conclusions: 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 for Nursing: 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.
Blumer, H. (1969). <i>Symbolic interactionism: Perspective and method.</i> Englewood Cliffs, NJ: Prentice-Hall.
Kass, N., Sugarman, J., Faden, R., & Schoch-Spana, M. (1996). Trust: The fragile foundation of contemporary biomedical research. <i>Hastings Center Report</i>, 26(5), 25-29.
List, M.A., Ritter-Sterr, C., & Lansky, S.B. (1990). A performance status scale for head and neck cancer patients. <i>Cancer</i>, 66, 564-569.
Mattson, M.E., Curb, J.D., & McArdle, R. (1985). Participation in a clinical trial: The patients' point of view. <i>Controlled Clinical Trials</i>, 6(2), 156-167.
Napholz, L. (1998). Enhancing research participation and retention for three ethnically diverse groups. <i>Journal of Cultural Diversity</i>, 5, 117-119.
Neufeld, A., Harrison, M.J., Hughes, K.D., Spitzer, D., & Stewart, M.J. (2001). Participation of immigrant women family caregivers in qualitative research. <i>Western Journal of Nursing Research</i>, 23, 575-591.
Roberts, L.W., Warner, T.D., & Brody, J.L. (2000). Perspectives of patients with schizophrenia and psychiatrists regarding ethically important aspects of research participation. <i>American Journal of Psychiatry</i>, 157, 67-74.
Ruzek, J.I., & Zatzick, D.F. (2000). Ethical considerations in research participation among acutely injured trauma survivors: An empirical investigation. <i>General Hospital Psychiatry</i>, 22, 27-36.
Seelig, B.J., & Dobelle, W.H. (2001). Altruism and the volunteer: Psychological benefits from participating as a research subject. <i>ASAIO Journal</i>, 47, 3-5.
Smith, B.A. (1999). Ethical and methodologic benefits of using a reflexive journal in hermeneutic-phenomenologic research. <i>Image--The Journal of Nursing Scholarship</i>, 31, 359-363.
Strauss, A., & Corbin, J. (1990). <i>Basics of qualitative research: Grounded theory procedures and techniques.</i> Newbury Park, CA: Sage.
Terrell, J.E., Nanavati, K.A., Esclamado, R.M., Bishop, J.K., Bradford, C.R., & Wolf, G.T. (1997). Head and neck cancer-specific quality of life: Instrument validation. <i>Archives of Otolaryngology--Head and Neck Surgery</i>, 123, 1125-1132.
von Strauss, E., Fratiglioni, L., Jorm, A.F., Viitanen, M., & Winblad, B. (1998). Attitudes and participation of the elderly in population surveys: Data from a longitudinal study on aging and dementia in Stockholm. <i>Journal of Clinical Epidemiology</i>, 51, 181-187.
Ware, J., Jr., Kosinski, M., & Keller, S.D. (1996). A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. <i>Medical Care</i>, 34, 220-233.