Stigma and Research Design: Promoting the Participant’s Voice in Qualitative Research on Stigmatised Matters

With the value of lived experience being realised in qualitative research, promoting the voices of participants was essential to my research (McIntosh and Wright, 2019) as it would not only acknowledge my participants as the real experts in the area but would also allow for the findings to be more grounded in and applicable to their work. However, as my research explored personal tutoring staff’s opinions of and experience with student sex work, I knew that stigma would be a significant issue throughout the research process.

Although my work specifically navigated sex work stigma, I feel that my reflections on the process could be generalised to other forms of stigma (particularly moral stigma) and could also be used in wider research on professional or busy populations. In particular, these reflections will relate to method selection and data collection as the relationship between stigma and research design could easily become a series of blogposts given how complex the matter. Before this discussion can begin, stigma will first be defined as well as the potential impact it can have on participants.

The Many Faces of Stigma

As previously said, stigma can come in various forms. These were categorised by Goffman (1963) and described by Cook (2012, p.334) as: bodily (relating to physical problems), moral (perceived flaws in the person’s character) or tribal (perceived familial or lineal flaws of the person). These types of stigma can then be further categorised as being experienced first-hand or by association (for example see Hammond and Kingston 2014 and Ahearne 2015).

While these categorises can be helpful in planning your conduct during your research as well as the research itself– such as, in my research, it was important to emphasise to participants that I was not there to cast moral judgement but to more objectively analyse their reactions and actions as part of the wider institutional response of their university – it is important to acknowledge that they are not rigid and should be approached with caution as defining such complex matters requires much nuance and flexibility.

This need for caution is also essential to your research design as qualitative methods like interviews have been found to act as concentrations of wider social processes and so can intensify experiences of stigma and make participants uncomfortable (Cook, 2012). This discomfort comes from the methods interrogating ‘the perceptions of individuals and the consequences [of them]’ (Link and Phelan 2001, p.366). This can then cause your participants to answer less openly and can be a hinderance to researcher-participant communication. For this reason, stigma needs to be a key consideration in your research planning as you need to go beyond complying with ethical guidance and ensure that sensitivity and nuance are at the heart of your approach.

Navigating Stigma in Your Research Design

Although other methods may have also been suitable, the methods I chose to gather data from my participants were self-administered online surveys (which contained vignettes and a series of open-ended questions) and follow-up semi-structured Zoom interviews. Despite these decisions being made for practical reasons such as the ongoing COVID-19 pandemic and being a sole-researcher with a small amount of time to work with, they also had several benefits when it came to navigating stigma and enabling participant communication.

The first of these methods was the survey which catered to the needs of my busy sample by allowing them to complete the survey when it suited them as well as the added benefit of giving an increased sense of privacy during the completion of the survey and providing them with room to reflect on their answers (Sierles, 2003; Braun et al, 2020). This reflective element would be extended on in the later interviews (which not all of my participants completed) but due to the long-form and open-ended nature of the survey, it allowed me to gather data so detailed that interviews would not be a necessity for all. However, the most important aspect of these surveys, I believe to be the vignettes. The vignettes allowed participants to explore the topic in a more hypothetical manner that reduced the chance of their discomfort whilst providing them with ample room to create responses around their interpretations of the scenarios (Barter and Renold, 1999). The final part of the process was a semi-structured interview on Zoom which were flexible in terms of scheduling and increasing the comfort of my participants. Additionally, the semi-structured nature of the interviews provided opportunities for greater reflection, further questioning of their responses by myself and presented them with a more casual chance to ask me any questions they had related to the research and anything they thought I may have neglected.

This combination of methods not only encouraged an open and comfortable setting for data collection but also allowed for sex work stigma to be acknowledged and for this to consciously influence the data. This decision to acknowledge stigma I found to be incredibly effective and, despite it not being an original part of my research plan, I believe it improved the experience of data collection and helped to actively destigmatise sex work even in such a small setting which ultimately, I argue to be the point of research on stigma in the first place.

In conclusion, methods that prioritise openness and reflection prove ideal for promoting participants voices on stigmatised matters especially when more private options are also available. However, what the most important things to bring to your research on such subjects are sensitivity, understanding of your participants and a willingness to confront the discomfort head on. Without these elements, real progress towards destigmatisation cannot be made.

References:

  • Ahearne, G. 2015. Between the Sex Industry and Academia: Navigating Stigma and Disgust. Graduate Journal of Social Science 11(2), pp.28-37.
  • Barter, C. and Renold, E. 1999. The Use of Vignettes in Qualitative Research. Social Research Update 25.
  • Braun, V. et al 2020. The Online Survey as a Qualitative Research Tool. International Journal of Social Research Methodology 23 pp.1-14.
  • Cook, KE. 2012. Stigma and The Interview Encounter. In: Gubrium, JF. and others. eds. The SAGE Handbook of Interview Research: The Complexity of the Craft. SAGE Publications, pp.333-344.
  • Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Touchstone.
  • Hammond, N. and Kingston, S. 2014. Experiencing Stigma as Sex Work Researchers in Personal and Professional Lives. Sexualities 17(3), pp. 327–347.
  • Link, BG. and Phelan, JC. 2001. Conceptualizing Stigma. Annual Review of Sociology 27, pp. 363-385.
  • McIntosh, I. and Wright, S. 2019. Exploring what the Notion of ‘Lived Experience’ Offers for Social Policy Analysis. Journal of Social Policy 48(3), pp. 449–467.
  • Sierles, F.S. 2003. How to Do Research with Self-Administered Surveys. American Psychiatry 27, pp.104-113.