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In this post-workshop summary, we describe three ethical challenges related to engaging people with lived experience as partners in health research. We share learnings and reflective prompts from our workshop delivered as part of the Canadian Bioethics Society Workshop and Community Forum held in May 2023.

Introduction: Experience-based co-design (EBCD) is a structured methodology of conducting healthcare quality improvement bringing together people with lived experience of a condition, families or carers, and healthcare service providers. EBCD has been applied to mental health and substance use (MHSU) settings. This scoping review aimed to: (a) synthesize the literature on the application of EBCD in the MHSU service sector; and (b) map out key adaptations made to the EBCD process, as well as the perceived impacts of the process and considerations unique to the MHSU sphere. Methods: A scoping review methodology was applied. Systematic searches for articles describing EBCD projects in MHSU were conducted across six bibliographic databases for literature published between 2013 and 2023, together with gray literature searches and reviews of reference lists. Records were screened for relevance, resulting in 24 included articles. Data were extracted in a spreadsheet and using qualitative data analysis software. Results are reported descriptively and in table format. Results: EBCD is being conducted in the MHSU sector in a limited number of high-income, English-speaking countries, applied to both quality improvement and new intervention development. Extensive methodology adaptations are described, with some steps frequently removed from the process or modified. A number of positive impacts of EBCD are described, highlighting the development of service adaptations or new services, as well as positive interpersonal impacts among stakeholders. Conclusions: EBCD is a valuable approach to collaboratively co-designing quality improvement initiatives with users of MHSU services, families or carers, and service providers, although it is also applied to new intervention development. Those implementing EBCD should carefully consider the way planned adaptations may affect the information gathered, the implementation experience, and the co-designed solutions. It is important to apply trauma-informed practices to EBCD and follow recommendations for authentic engagement, to promote genuine participation in co-designing solutions.

Abstract Background A constellation of often disabling long-term physical symptoms enduring after an acute SARS-COV-2 infection is commonly referred to as Long COVID. Since Long COVID is a new clinical entity, research is required to clarify treatment needs and experiences of individuals affected. This qualitative descriptive study aimed to provide insight into Long COVID treatment and service experiences and preferences of individuals experiencing Long COVID and the intersections with mental health. Methods The study was conducted out of a tertiary care mental health hospital, with online recruitment from the community across Canada. A total of 47 individuals (average age = 44.9) participated in one of 11 focus groups between June and December 2022. Five focus groups were conducted with participants who had pre-existing mental health concerns prior to contracting SARS-CoV-2, and six were with people with Long COVID but without pre-existing mental health concerns. A semi-structured interview guide asked about service experiences and service preferences, including mental health and well-being services. Discussions were recorded, transcribed, and analyzed using codebook thematic analysis. Results When accessing services for Long COVID, patients experienced: (1) systemic barriers to accessing care, and (2) challenges navigating the unknowns of Long COVID, leading to (3) negative impacts on patient emotional well-being and recovery. Participants called for improvements in Long COVID care, with a focus on: (1) developing Long COVID-specific knowledge and services, (2) enhancing support for financial well-being, daily living, and building a Long COVID community, and (3) improving awareness and the public representation of Long COVID. Conclusions Substantial treatment barriers generate considerable burden for individuals living with Long COVID. There is a pressing need to improve treatment, social supports, and the social representation of Long COVID to create integrated, accessible, responsive, and ongoing support systems.

The majority of people who contract COVID-19 experience a short period of symptomatic infection. However, symptoms persist for months or years following initial exposure to the virus in some cases. This has been described as long COVID. Little is known about the lived experience of this condition, as it has only recently emerged. This study aimed to explore the experiences of mental health, quality of life, and coping among people living with long COVID. A sample of 47 adults with lived experience participated in web-based focus groups. Separate focus groups were held for 24 individuals with pre-existing mental health conditions and 23 individuals without pre-existing mental health conditions. Data were analyzed using a codebook thematic analysis approach. Five themes were identified as integral to the long COVID experience: The Emotional Landscape of Long COVID, New Limits to Daily Functioning, Grief and Loss of Former Identity, Long COVID-related Stigmatization, and Learning to Cope with Persisting Symptoms. These findings illustrate the immense impact of long COVID on mental health and quality of life. Minimal differences were found between those with and those without pre-existing mental health conditions, as both groups were substantially impacted by the condition. Attention to the perspectives of people with lived experience of long COVID is necessary to inform future directions for research and clinical practice.