This project addresses a critical gap in support for individuals with olfactory dysfunction, particularly following viral illness. Smell loss has become more prevalent after COVID-19, and there are limited accessible, evidence-based supports to help individuals manage its ongoing impacts. Many individuals report challenges related to nutrition, food safety, social relationships, and mental health, yet care pathways are fragmented. There is a clear opportunity to develop scalable, patient-informed strategies to support adaptation.
To address this gap, we will host a series of virtual co-development events over several weeks. Activities will include semi-structured interviews to capture lived experiences, as well as collaborative group sessions focused on identifying unmet needs, barriers to recovery, and potential solutions. These sessions will also explore opportunities to expand existing support strategies, including creation of peer-based support for people living with olfactory dysfunction and their families, and developing information tailored to underrepresented experiences within olfactory dysfunction (e.g., parosmia).
Participants will include five people with lived experience (PWLE) of olfactory dysfunction serving as patient partners, one spouse providing a family/support perspective, and members of the research team, including two postdoctoral fellows and one faculty member at UVic with ongoing research programs related to olfactory dysfunction (Jamie Knight, Brianna Turner, and Marlise Hofer). Together, the team brings expertise in the social, clinical, and sensory aspects of smell loss. Patient partners will represent diverse experiences and backgrounds, including different types and durations of smell loss, to ensure that insights are inclusive and broadly applicable.
The anticipated outcomes of this activity are to:
1) identify key gaps in current support and care experiences,
2) generate patient-informed priorities for improving support strategies,
3) co-develop recommendations for scalable, accessible interventions that can be implemented beyond specialist care settings.
Findings will directly inform the refinement of self-guided support tools and contribute to broader knowledge on how to support individuals living with persistent sensory changes. This work will also strengthen preparedness for future public health emergencies by identifying effective approaches to support long-term recovery following widespread sensory disruption.