Purpose
This case study aims to understand the experience of care from a patient/carer perspective and to describe how the method can be replicated to address gaps in evidence relating to integrated person-centred care.
Design/methodology/approach
The case study was constructed using data extracted from personal diaries and medical records kept by a person with a complex condition, correspondence with family from the last 18 months of life and interviews with the carer and long-term conditions coordinator. The number of professionals or teams involved in providing care from statutory services, the third sector, and private providers were counted to understand the ecosystem of care. The number of contacts was plotted by provider and purpose of care. The type of care and hours of respite were estimated. A protocol was developed to assess the feasibility of replicating the data and analyses used.
Findings
There were 35 care providers from the public, private and the third sector, demonstrating that only the patient or carer can identify the ecosystem of care. The majority of care was for respite and on average, the carer provided four hours of care per every respite care hour. The method was replicated successfully.
Research limitations/implications
The case study formed the basis of a workshop that brought together health care professionals from the public services and the third sector. The discussion led to the identification of gaps and areas where greater coordination between providers would benefit patients.
Originality/value
The case study method combines contemporaneous patient and carer sources of data and health service activity to create a detailed account of care at the end of life. The approach addresses gaps in person-centred evidence for the development and evaluation of integrated palliative and end-of-life care.
