학술논문

Determining the destination: a co-designed chronic advanced cancer rehabilitation conceptual framework for engagement of individuals with lived experience in rehabilitation research
Document Type
article
Source
Research Involvement and Engagement, Vol 10, Iss 1, Pp 1-9 (2024)
Subject
Patient-oriented
Patient-engagement
Rehabilitation
Physiotherapy
Occupational therapy
Speech therapy
Medicine
Medicine (General)
R5-920
Language
English
ISSN
2056-7529
Abstract
Abstract Background 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. Methods 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. Results 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. Conclusion 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.