Does anyone ever really want to make a complaint about poor treatment in health care? The act of making a complaint itself is not without its demands, nor without the potential for (further) discomforts. While parts of our healthcare system offer avenues to consumers to file an informal of official complaint, emerging evidence suggests that people rarely take up the opportunity to complain, even when they have been treated poorly or been subjected to stigma and discrimination.
According to Sara Ahmed, the term ‘complaint’ itself is historically loaded, invoking heavily gendered and negative connotations. In her 2021 book, Complaint!, the British-Australian feminist and theorist explores the institutional and social dynamics of complaint, arguing that someone who makes a complaint can end up being viewed as a troublemaker, an ‘inconvenience’ or a ‘killjoy’, or as someone who causes ‘drama’ and gets in the way of ‘important work’. Using a case study of women complainants in a university setting, she anatomises the way in which becoming a complainer can mean attracting attention to oneself and getting exposed to the risk of becoming a spectacle. And, as Ahmed also describes, complaint processes often demand that a complainant assemble and present evidence and information. Complaints demand time, energy, technological access and literacy, and such labour can be especially difficult to perform among people already experiencing the effects of discrimination and other forms of disadvantage.
In our latest article, we take up Ahmed’s work on complaint to better understand why people affected by hepatitis C rarely make a complaint when they have experienced stigma and discrimination in healthcare settings. Although research shows that such experiences are common, official complaints very seldomly occur. Why don’t people complain? And given we know stigma and discrimination in these settings is a problem, how do we address it if no one is willing to speak up about it? Or, in other words, how do we make complaint work better for the people it is allegedly designed to protect?
Drawing on the experiences of interview participants from the post-cure lives project, our new article takes a closer at how people with (a history of) hepatitis C feel about complaints processes and the act of complaining. Many of our interviewees were acutely aware of the deficiencies in the quality of their care, and many had acted as powerful advocates for their interests and the needs of their communities; many were involved, for example, as peers or in other forms of community advocacy and representation. And yet, almost none had ever made a formal healthcare complaint. Our research suggests that, in part, this is because they often view stigma and discrimination as simply so common that it had become an almost ‘normal’ part of their lives. For some, such experiences had been so frequent, and had occurred across so many spheres of life, that it became hard to recall and describe a specific incidence of them. For example, when prompted to provide an example, Eddy explained that:
It all becomes so common, that’s the problem–that you forget.
For some, the ubiquity of these experiences had led them to conclude that there was little point in making the (significant) effort involved in calling them out.
Alongside the experiences of people who have lived with hepatitis C, our article draws on the perspectives of people who work with hepatitis C-affected communities in policy, health, legal and advocacy roles. There is much to learn from them, too, about the institutional obstacles to complaint, and the problems with existing complain mechanisms. Echoing Ahmed, our research uncovered ways in which complaint, as it is currently configured, can perpetuate discrimination and disadvantage. Our article calls, instead, for a ‘troubling’ of complaint, suggesting ways to consider complaint and complainers differently to make these processes more appealing and enabling and effective at combating the problems they are designed to address.
You can read the full article in full here.
Citation: Lenton, E., Kagan, D., Seear, K., Mulcahy, S., Farrugia, A. Valentine, K., Edwards, M., Jeffcote, D.. (2023). Troubling complaint: Addressing hepatitis C-related stigma and discrimination through complaint mechanisms. Sociology of Health & Illness