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Table 1 Summary of the thematic analysis related to the theme “Power of position, knowledge and language”

From: It takes two to tango: carers’ reflections on their participation and the participation of people with dementia in the James Lind Alliance process

Text unit Code Sub-theme Theme
If one contributes, one must be taken seriously. I gather that we are very popular with researchers because they will not receive funding if they don’t include service users. It’s rather scary. One doesn’t really know if research becomes more applicable with user involvement Contribute
Respect
Researchers need Users
Alibi
Condition for funding
Scepticism
Applicable
Tension between different purposes Power of position, knowledge and language
So, our participation in this, it’s to be able to help those coming after us. That’s the way it’ll be, so it becomes interesting to see if what we’ve contributed to the project can help others. That’s the way it has to be. Because we are past that stage, so we could just have turned our backs and not cared, because we are done with all of this, but that’s not who we are. I want to contribute. I want to make a difference to those coming after us Focus on future
Impact
Altruism
Responsibility
Make a difference
Contribution
Participation
Involvement must have impact
The research must have some consequences, must lead to something within health and social care or in politics, not least for the people in question. Research on causality might be too optimistic. As previously mentioned, it is my opinion that grasping the experiences of those with dementia and their carers is important for facilitation and obtaining insight Consequence for health services
Impact
Consequence for politics
Consequence for public users
The importance of users’ experiences
Realistic
Relevance
Facilitation
Obtaining insight
Importance of knowledge for policy and health services