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Patient and caregiver perspectives (abstract)
Patient and caregiver perspectives on managing pain in advanced cancer: A qualitative longitudinal study (UK)
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.
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