Recruiting and Retaining Patient–Caregiver–Nurse Triads for Qualitative Hospice Cancer Pain Research

Abstract

Background: Qualitative pain research for hospice patients with cancer and their caregivers involves recruiting and retaining participants with multiple vulnerabilities and ethical and logistical challenges. These have been reported for studies of individuals or dyads. However, there are no reports of the related challenges and outcomes where the sampled population was a hospice triad. Objectives: Qualitative research about pain management for home hospice patients with cancer contributes rich descriptive data and such studies are critical to improving cancer pain outcomes. We describe the ethical and pragmatic challenges we faced in a study of the hospice caring triad, operationalized as the patient, family caregiver, and nurse; how our study design anticipated them; and related outcomes. Results: We found that having an established relationship with the hospice agency at which we recruited participants, clearly identifying potential participants at the onset of hospice care, practice using a recruitment script, patient recruitment of caregivers, establishing rapport, and participants determining when interviews should end helped us recruit and retain our sample. We were unable to accrue our anticipated triad sample, partially because of nurse gatekeeping and the condition at admission of patient participants who enrolled but had physical decline or died prior to written consent. Conclusions: Although researchers will always face challenges to enrolling individuals and groups in cancer pain studies, with careful study design, recruitment, and retention planning and research team-participant engagement, it is possible to gather a robust corpus of qualitative data.