The ethical soundness and relevance of qualitative secondary data analysis in palliative care research

Background: Qualitative secondary data analysis consists in the use of existing qualitative data to find answers to research questions that differ from the ones asked in the original research. In palliative care research, the use of qualitative secondary data analysis has been increasing over the last decade. Nevertheless, this research approach is not without methodological or ethical challenges, which need to be addressed in order to ensure its ethical soundness. Aim: To assess and discuss the ethical issues, procedures, soundness and relevance of performing qualitative secondary data analysis in palliative care research. Methods: Systematic review of empirical studies in palliative care, following PRISMA 2009, to identify the main ethical challenges, procedures, soundness and relevance of the secondary use of existing qualitative data. Searches were performed in five databases (PubMed, Web of Science, CINHAHL Complete, Medline e EBSCO Host) in January 2017 and updated in April 2019. Inclusion criteria were: empirical studies conducted in palliative care reporting the use of qualitative secondary data, in English and Portuguese, with full text and references available. Data were analyzed using both inductive and deductive content analysis. Qualitative assessment of included studies and data extraction were performed independently by two members of the research team using proper tools. Results, Outcomes and Implications: A total of 98 results were returned from initial searches, of which 23 were included in the synthesis. The main ethical issues identified in these articles were: (1) autonomy and informed consent for the reuse of data from a previously conducted original study; and (2) privacy, confidentiality and pseudo-anonymization of original data and information. Ethical procedures reported in all the studies were (1) ethics approval from an institutional academic ethics review board for performing the secondary analysis of already existing qualitative data and (2) ethics approval from the original studies. Two articles also thoroughly described the ethical soundness and relevance of their qualitative secondary analysis. This was framed referring to the fact that reusing qualitative data in palliative care research contributed to (1) the protection of vulnerable participants of any potential harm or further intrusion and (2) the prevention of participants’ fatigue due to repeated research participation. Conclusions: This systematic review shows that performing qualitative data analysis in palliative care research is ethically sound and relevant. By exploiting the potential of a rich source of qualitative data and information, qualitative secondary analysis embraces an ethical dimension and diminishes the risk and burden of research fatigue. To be so, palliative care researchers need to provide detailed information on all the ethical procedures and safeguards implemented in their secondary studies. Acknowledgments: FCT Portugal - Scientific Employment Stimulus.