In this chapter we outline the methodological and ethical approaches employed in our research exploring stigma associated with Tourette’s syndrome (TS) through secondary qualitative analysis. Rooted in social constructivism, the study examined anonymised interview data from two prior studies, adopting a hybrid thematic analysis to uncover how stigma manifests and impacts individuals with Tourette’s. We highlight the benefits of secondary analysis, including its cost-effectiveness and ethical advantages, such as reducing participant burden while ensuring robust data use. We also address critical ethical considerations grounded in principlist and virtue ethics, with a focus on participant autonomy, non-maleficence, and justice. Additionally, we reflect on our role as researchers, the insider/outsider dynamic, and the ethical challenges of our work. By engaging directly with the Tourette’s community through advisory groups and participatory research, we ensured the research was both scientifically rigorous and aligned with the lived experiences of those who experienced TS stigma.

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Tourette’s Stigma: Research Methods, and Ethics

  • Melina Aikaterini Malli,
  • Rachel Forrester-Jones

摘要

In this chapter we outline the methodological and ethical approaches employed in our research exploring stigma associated with Tourette’s syndrome (TS) through secondary qualitative analysis. Rooted in social constructivism, the study examined anonymised interview data from two prior studies, adopting a hybrid thematic analysis to uncover how stigma manifests and impacts individuals with Tourette’s. We highlight the benefits of secondary analysis, including its cost-effectiveness and ethical advantages, such as reducing participant burden while ensuring robust data use. We also address critical ethical considerations grounded in principlist and virtue ethics, with a focus on participant autonomy, non-maleficence, and justice. Additionally, we reflect on our role as researchers, the insider/outsider dynamic, and the ethical challenges of our work. By engaging directly with the Tourette’s community through advisory groups and participatory research, we ensured the research was both scientifically rigorous and aligned with the lived experiences of those who experienced TS stigma.