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Table 4 The roles of the AYAs in the collaborations based on the experiences reported by researchers

From: A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: “plan, structure, and discuss”

 

Practical support

Listener

Co-thinker

Advisor

Partner

Decision-maker

Identify topics

    

| | |

|-

Prioritize

   

|*

| |

|-

Formulate research question

  

|

|

 

|-

Develop study design

  

| |

|* |*

|+ 

|-

Conduct research

| |

   

|+ 

|-

Analyze and interpret

   

|*

| |

|-

Disseminate information

|

   

|

|-

Implement

     

|-

Evaluate

  

|

|*

 

|-

  1. The first column shows the nine phases of the research cycle [20]. The first row shows the five different roles AYAs could have based on the Involvement Matrix [17]. The role of 'practical support' was added, which encompasses AYAs helping with practical tasks like preparing questionnaire envelopes. Each line represents an example of AYA involvement mentioned by the participants of this study. The examples were classified into the Involvement Matrix. |- = One researcher reported that AYAs performed their own research under her supervision, which can be seen as a decision-maker role for all phases of their own research project. |* = role is not entirely clear but shows most aspects of advisor. |+ = role includes aspects of other roles e.g. providing feedback via email