Research Award Recipients

Disclosure and concealment of diagnosis & stigma related to advanced chronic kidney disease: supporting people with lived experience through co-creation

Co-applicant(s): Anénome Cournoyer-Benoit, Arlene Desjarlais, Carven Cambry, Cathy Woods, Eve Riendeau, Kara Schick-Makaroff, Laura Marie Drudi, Marie-Chantal Fortin

Lay Abstract

Similar to other chronic diseases such as mental illnesses, HIV or multiple sclerosis, chronic kidney disease (CKD) is described as an "invisible" disease. While talking about the disease can have positive impacts for the person living with it (developing a sense of self and empowerment, building intimacy within relationships, greater social support, etc.), it may also be associated with negative outcomes (discrimination, limitation of professional opportunities, impact on personal relationships, etc.), in particular in cases of stigmatized conditions.

The Merriam-Webster dictionary defines stigma as “a set of negative and unfair beliefs that a society or group of people have about something” or “a mark of shame or discredit”. Stigma related to health conditions can profoundly affect people living with illnesses and encourage them to hide their diagnosis. People living with a hidden stigmatized identity are at risk of psychological distress and negative health outcomes (e.g. related to not following their treatment or not seeking required health care). CKD, when reaching more advanced stages, is a life-limiting illness. People living with kidney failure require replacement kidney therapy (dialysis or kidney transplantation) to sustain life. The symptom burden and time-consuming dialysis treatments can have tremendous impacts on people’s quality of life and life participation, including personal relationships, ability to work, ability to travel, etc. In certain cultures, CKD and kidney failure are strongly stigmatized, bringing people to hide the fact they live with a chronic illness and require dialysis. Therefore, people living with CKD may be faced with difficult decisions on telling people around them about their condition (e.g. family members, friends, employers, etc.). If people decide to disclose their disease, they may also ask themselves when and how to discuss this.

There is currently a lack of resources to support people living with advanced CKD and/or requiring kidney replacement therapy in their decision to share or hide their condition, and to provide them with readily available information to help them in discussing their diagnosis depending on the person with whom they are sharing. For example, Multiple Sclerosis (MS) Canada provides a guide to talk about MS with children, as well as an employer’s guide to support people living with MS. No such resources currently exist in relation to CKD. To address this gap, we wish to collaborate with people with lived experiences of advanced CKD to:

1) Explore the potential impacts (positive and negative) of talking about their diagnosis with people around them

2) Assess their specific needs in supporting them in their decision to disclose or not their diagnosis (e.g. employment, relationships, family support, etc.)

3) Create materials to support them in discussing their condition (e.g. employer’s guide, etc.)

To achieve this, we will organize small group discussions (focus groups) with people living with advanced CKD to learn more about their perspectives [Phase 1]. Then, we will build a committee of lived experience partners, along with researchers, healthcare providers and other people with an interest in this subject (e.g. partners from patient associations, healthcare managers, etc.), who will meet in various subcommittees to co-create materials for people living with advanced CKD and their networks (e.g. family, employers, etc.) [Phase 2]. The findings from Phase 1 and the proposed materials created in Phase 2 will then be presented to a broader group (people with lived experience, healthcare providers, etc.) during a workshop to get comments and suggestions about the work undertaken previously [Phase 3].

Following this workshop, the committee will finalize the materials in light of the feedback received. Finally, they will share the findings and materials with the kidney community and beyond, in various forms (e.g. written documents, infographics, videos, webinars, etc.) [Phase 4]. This project is led by an early-career researcher/nephrologist (NPA) and a group of lived experience partners. They are supported by additional researchers and healthcare providers (including a sociologist, doctors and nurse) and other partners (Can-SOLVE CKD and Unité de soutien SSA Québec).