Table 2 GRIPP2 checklist

Aim

The aim of involvement of IWLE in this paper is to develop a co-designed conceptual framework to integrate engagement strategies into rehabilitation research among those living with chronic advanced cancers. We aimed to involve two groups of partners through all the research steps using a Collaboration level of engagement.

P. 6

Methods

• Group one of IWLE were recruited to collaborate on this project. Using semi-structured interviews, they were initially consulted to identify key issues of concern relating to their experiences that would inform the design of the conceptual framework.

• The same initial two individuals then collaborated on the conceptualization and development of the initial framework in partnership with the researchers, providing feedback to adapt some words and items, and took part in the consensus process.

• Group two included four individuals who participated in the iterative process of reviewing and ensuring that the perspectives of individuals with chronic advanced cancers were included in the design of the framework, providing feedback and suggestions on the words used and items that were missing.

• Both groups were involved in the final consensus process for the final version of the framework.

• Group one were involved in the writing and editing of the manuscript and are co-authors.

P.5–6

Results (Outcomes from patient involvement in the study)

• From the semi-structured interview, unique and emergent themes were identified and were presented in the results section (shared understanding, transparent appreciation, iterative processes). Those themes were integrated in the design of the conceptual framework.

• Resulting from the collaborative and iterative processes with both groups, a co-designed conceptual framework was developed.

• Highlighting the experiences of individuals living with and affected by chronic advanced cancer was enabled by the quotations provided by the both groups.

P.7–9

Fig. 2

P.4–5, 7

Discussion and Conclusion

Involvement of both groups influenced greatly the outcomes of this work, especially since they were involved at all stages of research. Every step was planned, undertaken and reviewed in collaboration. We believe this leads to the development of a framework that has a high potential of applicability in upcoming research in this field since it represents the perspective of this population.

P.13–17

Reflections/ Critical Perspective

We identified that there were several strengths related to the involvement of IWLE in the writing of this paper, namely through the use of a stringent scientific approach (semi-structured interviews, narrative review) in gathering information; through shared knowledge from a multidisciplinary team of authors, and through iterative process of feedback and adaptation to reach consensus.

P. 16–17