Table 2 Positive and negative experiences in patient engagement
Theme | Positive experiences | Negative experiences |
|---|---|---|
1—Motivations to engage in research | Project related to patient-partners’ experiences | |
2—Activities in patient engagement | Learning and developing skills | |
Stimulating challenges | Overwhelming challenges | |
Feeling useful because impacts of contributions are perceived | Feeling useless because no impact is perceived | |
Not knowing if contributions have an impact | ||
3—Structure | Clear roles and project progression | Unclear roles and project progression |
Adequate engagement level | Engagement level too low | |
Engagement level too high | ||
Flexible engagement level | ||
Convenient logistics | Inconvenient logistics | |
4—Competence | Confidence in competence | Low confidence in competence |
5—Team dynamics | Power balance achieved | Power differentials maintained |
Informal atmosphere | ||
Positive researcher attitudes | Negative researcher attitudes | |
Relationships beyond patient engagement roles | Few meaningful relationships | |
6—Impacts on broader life | Pride from engaging | |
Validation that patient-partners are important | ||
Increased self-esteem | ||
Distress through sensitive topics | ||
Building a social network | ||
Peer support for illness | ||
Participation in a meaningful activity, development of identity | ||
7—Illness | Illness-related logistical challenges considered by researchers | Illness-related logistical challenges not considered by researchers |
Better health | ||
Finding meaning for illness |