Recruiting participants for palliative care research: A reflective discussion paper

Abstract

BackgroundThis discussion paper provides a reflection on ethical aspects of participant recruitment experiences during one research (PhD) project in the Republic of Ireland (ROI). Using Gibbs' framework for reflection, this paper examines these experiences. The research (PhD) project that informed this reflection aimed to understand the experiences of family caregivers when caring for family members at the end of their life, through recorded interviews in the home, within the context of palliative care provision. Ethical approval had been granted for the main study; however, this paper does not draw on empirical data from the study.AimThis discussion paper aims to provide a reflection on some challenges faced whenrecruiting family caregivers at end of life during the research (PhD) project.MethodsGibbs' framework for reflection was used to reflect on experiences of recruitment of 10 family caregivers, whose relatives were receiving palliative care, and who were interviewed in their home environments.FindingsOur reflections revealed that the recruitment process was protracted and challenging. When attempting to recruit family caregivers for the study, recruitment extended over a longer period than originally planned. Our reflections suggest that while gatekeeper workload was an influencing factor, a concern arose that they may have applied their own additional and personal ethical measures to determine participant suitability.ConclusionMore education and supportive collaboration with gatekeepers may be required to ensure that they develop a more comprehensive understanding of the gatekeeper role and are assured and informed of the ethical benchmarks that preceded their involvement. Enhanced understanding may highlight the benefits of families taking part in healthcare research.

Keywords: Discussion; gatekeeping; palliative care; recruitment; reflection; topic areas.