Background To deliver person-centred integrated end of life care, providers need to understand the experience of patients and carers. Real-time experience may differ from retrospective accounts of experience which may have implications for initiatives to improve care.
Aims To explore the benefits of using a combination of prospective and retrospective data collection methods from multiple sources to understand the experience of care of a patient and carer.
Methods The carer of a patient with progressive supranuclear palsy was approached six months after death for an interview. Using personal diaries, we extracted data on face-to-face contacts with Department of Health and Social Care (DHSC), charities and private care providers for the last 18 months of life. Numbers of contacts were plotted by month and sector. A timeline from pre-diagnosis to after death was created using details provided by the carer and verified by correspondence generated at the time of care.
Results In the last 18 months of life, the patient received care from 25 DHSC providers, four charities, six private providers, plus family and friends. The patient had an average of 24±8 encounters per month. DHSC activity declined in April, September and December (1st 12 months). The main providers of care in the last months of life were from the voluntary and private sector. The carer developed a system for organising documentation, appointments, medications and outside services. The carer reported that the long-term conditions coordinator was invaluable for coordinating DHSC care. However, the carer remained the overall coordinator. Correspondence was critical in constructing an accurate and unbiased timeline. The results surprised the carer when compared to their recollection of events.
Conclusions A combined approach to data collection is a promising method to capture user experience to inform service design and delivery. Further cases studies in different conditions are planned.
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