ARE PALLIATIVE CARE RESEARCH SAMPLES BIASED? RESULTS FROM INTERVIEWS WITH EXPERIENCED PALLIATIVE CARE STAFF
Introduction There is evidence that palliative care patients wish to be involved in palliative care research (Terry et al 2006) but recruitment proves problematic (Bennett 2010).
Aims and Methods The purpose of this small study was to understand issues about patient recruitment to research studies in hospice settings from clinicians' and researchers' perspectives. Researchers and clinicians were recruited from various palliative care settings (n=12). Participants were interviewed individually or in pairs using guided questions during June/July 2012. Interviews were recorded, transcribed and content analysis performed.
Results The sample included research practitioners (n=3), clinicians (n=7) and professionals with dual research and clinical roles (n=2). Rather than asking all eligible patients, staff practice ‘gatekeeping’, only asking those who fit their ‘ideal participant criteria’. These patients were stereotypically deemed nice, co-operative, chatty and young. Those who tended not to be approached were poorly, emotional, angry or older. However, staff recognised that patients wanted to contribute to research and should be invited. They had experience of patients acting autonomously including those who declined or withdrew from studies so there was some evidence that patients could make these decisions for themselves.
Conclusions There appears to be an unwritten code to only include those fitting the ideal research participant stereotype. Secondary screening for the ideal participant may create a biased sample and fail to address issues pertinent to all palliative care patients. Such gate keeping also denies patients the potential satisfaction of having contributed to knowledge development.
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