Grant: Planning and Dissemination Grants - Institute/Initiative Community Support

People living with chronic kidney disease (CKD), including those requiring dialysis treatment, may experience significant stigmatization related to their diagnosis. In parallel, talking about their diagnosis (disclosure) within their social networks (e.g. in the workplace) may prove to be very challenging for people living with advanced CKD and may be associated with both positive and negative impacts. Some people may therefore choose to hide (conceal) their diagnosis, which can include having to cover their dialysis access. The struggles related to this dilemma between disclosure and concealment of diagnosis can impact social interactions, employment and mental health, as well as adherence to treatment. For example, a person not willing to talk about his diagnosis may decide not to take his required medication when having a meal with friends to avoid having to provide explanations. Our goal is to provide meaningful support to people living with CKD, including those treated by dialysis, in navigating disclosure and concealment dilemmas surrounding their diagnosis, while also addressing the issues associated with stigma related to kidney failure and dialysis need. To achieve this, we first wish to summarize what has already been published on these subjects. In next steps, we wish to organize a workshop centered around people with lived or living experience of CKD to better understand their lived experiences and perspectives on stigmas related to the diagnosis and challenges faced surrounding diagnosis disclosure and concealment, as well as their needs to better support them in dealing with these situations. This exploration of what is already known about these issues is very important to better plan the workshop we wish to organize.