Table 2 Key themes in data analysis
Coded theme | Dimensions of the issue and reflective questions |
|---|---|
Choice and limitations | The problem of different roles, scope and resourcing Who decides? Can PPI representatives change/increase their input if they want to? |
Accessibility | Literacy (health, educational, cognitive); mobility; distance; digital. What are ‘reasonable’ adjustments? Can we ever be inclusive enough? |
Diversity | Socio-demographics of the ‘available and willing’ are not reflective of needs for some studies – different models can overcome this but how can we ensure diversity of views? The ‘professional’ PPI representative – conflict between growing their expertise over time and their need to maintain a ‘lay’ perspective |
Team relationships | Important enabler of PPI input and maximising contribution. Can become obligated/collusive. Need to avoid dependency. |
Skills | Interpersonal skills really important especially for the main PPI link. Also understanding of group dynamics. Both researchers and PPI representatives need to be open to new ideas and learning. |
Attitudes | Respect, professionalism, honesty in all concerned (or involved) |
Infrastructure | The right inputs at all stages Gaining and retaining funding Gaining and retaining skills over time Using networks |
Bureaucratic issues | ‘Employment’ or ‘volunteer’ status Pay/tax/human resource requirements./consequences for benefits |
Boundary issues | Risks where personal needs and priorities dominate the PPI input Pushback – not accepting limits of role or resources |
Impact | How do we define and measure impact?! |