Determining the destination: a co-designed chronic advanced cancer rehabilitation conceptual framework for engagement of individuals with lived experience in rehabilitation research

Individuals living with chronic advanced cancer (CAC) often face distinct physical, functional, and cognitive issues. Their rehabilitation needs are not yet routinely met, warranting further CAC-specific rehabilitation-based research. Given the complexity of functional and symptom presentations, engagement of individuals living with CAC as partners in the research process is encouraged to better understand the lived perspective. Formal engagement requires both structured approaches and iterative processes. The aim was to co-design a conceptual framework to develop and integrate engagement strategies into rehabilitation research focused on CAC populations. A multidisciplinary team of authors, including two individuals with lived experience, conducted an implementation-focused descriptive study to inform future research design, including: interviews and follow-up, review of current models and approaches, and development of a co-designed conceptual framework for engaging individuals with lived experience into CAC-specific rehabilitation research. Emergent themes include shared understanding, transparent appreciation, iterative processes and unique partnership needs. A definition, guiding principles and tools for engagement were identified. In consultation with individuals with lived experience, and application of the emergent themes in context, a conceptual framework to guide the engagement process was developed. A novel conceptual framework for engaging individuals with lived experience with CAC as partners in rehabilitation research is proposed to facilitate implementation-focused team-based approaches for this population. Living with chronic advanced cancer (CAC) affects all parts of a person’s life. Rehabilitation, such as physiotherapy, can be necessary. Healthcare data shows that rehabilitation needs of people with CAC are not yet being regularly met and that more research in this area is needed. Because CAC is complex and impacts each person differently, having people with CAC included as partners on the research team will likely help researchers better understand and explain rehabilitation needs of people with CAC. Our group of authors include different healthcare professionals, researchers, and two individuals with lived experience. Together, we carried out an implementation study and designed a framework to guide other researchers in including individuals living with CAC on research teams. We found that important themes for individuals with lived experience were: shared understanding, transparent appreciation, iterative processes (such as back and forth communication) and unique partnership needs. We titled the conceptual framework a “Co-designed Chronic ADVanced CANCer Rehabilitation” or “Co-ADVANCE” for short.