Patient and caregiver perspectives on managing pain in advanced cancer: A qualitative longitudinal study

Background: Despite advances in treatment of pain in advanced cancer, it remains a major source of suffering with adverse effects on patients' life quality. There is increasing understanding of its multi-dimensional nature and the variable responsiveness of medication to complex pain. Less clear is how patients and their caregivers respond to and manage pain complexity. Aim: To explore patients' and carers' experiences of advanced cancer pain and the processes that they engage in to manage pain. Design: Qualitative study employing face-to-face interviews at two time points and audio diaries. Data were analysed using grounded theory strategies. Setting/participants: Purposive sample of 21 advanced cancer patients and 16 carers from oncology outpatients in a tertiary cancer centre and a hospice. Results: Three distinct patterns of pain were discerned in patients' accounts, distinguishable in terms of complexity, severity, transiency and degree of perceived control over pain. Pain was dynamic reflecting changes in the disease process, access to and effectiveness of pain relief. For patients and carers, neither pain relief nor expertise in pain management is secured once and for all. The main drivers of help-seeking and action by patients to manage pain were the sensory experiences of pain and meaning attached to it, not beliefs about analgesia. Conclusion: The complex and dynamic nature of pain and how it was understood shaped help-seeking and pain management. Variable effectiveness of pain relief for different pain types were challenging for patients and professionals in achieving relief.