Table 3 Summary of the categories and sub-categories of the patients and caregivers
Categories | Sub-categories | |
|---|---|---|
Patients | Informal Caregivers | |
Types of unmet information needs | • Disease- and treatment-related information | • Disease- and treatment-related information |
• Daily life, particularly food therapy | • Caregiving-related information | |
• Psychological and physical symptom management | • Psychological adjustment | |
• Financial support | • Financial support | |
Reasons for information needs not being met | • Patient factors ○ Knowledge and beliefs ○ Poor health status ○ Low motivation: Fear | • Caregiver factors ○ Knowledge and beliefs ○ Low motivation: Fear |
• Healthcare professional factors ○ Have no time due to their heavy workload ○ Uncertain answers | • Healthcare professional factor ○ Have no time due to their heavy workload | |
• Family/social support ○ Insufficient family support ○ Social isolation | • Family/social support ○ Insufficient family support | |
Preferences for provision of information | • Information provider: preferred healthcare professionals | • Information provider: preferred healthcare professionals |
• Information format: written information | • Information format: face-to-face conversations but preferred to hold back unpleasant information from the patient | |
• Timing of information: changed and fluctuated throughout disease trajectory | • Timing of information: changed and fluctuated throughout disease trajectory | |
Meaning and role of information | • Self-management | • Being more prepared for caregiving role |
• Decision-making | • Decision-making and future planning | |
• Hope for and chance of survival | • Hope for and chance of survival | |
• Psychological impact | • Psychological impact | |