“I won’t be able to speak for three days after”: Ethical and practical considerations in qualitative research involving people with a laryngectomy

Purpose: A laryngectomy impacts communication, swallowing and breathing. It is disfiguring and can disrupt quality of life, one’s sense of identity, and relationships. It can increase dependence on others, trigger social stigma, avoidant coping and suicidal risk. Qualitative research has the potential to enable greater understanding of these consequences. However, almost nothing has been written about the specific ethical issues that can arise when carrying out research with people with laryngectomy (PWL). This paper builds on the experiences of the authors in the field and seeks to examine and explain these research ethics considerations and how they impact research design, data collection, data analysis and dissemination. Method: Using a framework based on the values underpinning the Australian National Statement on Ethical Conduct in Human Research, respect, merit and integrity, justice and beneficence, we have highlighted key issues relevant to this particular population. Main contribution: Different practical approaches are provided to address the ethical concerns that arise when conducting research with PWL. These include access to participants and ensuring diverse representation; balancing harm and benefit; achieving accurate interpretation, analysis and representation of the data generated through the research; research as a partnership that is respectful, empowering and fosters collaboration. Conclusion: This paper breaks new ground in discussing the ethical considerations and practical challenges relevant to researching the experiences of PWL.