Supporting carers providing end of life care during the transition from hospital to their family member's preferred place of care. A participatory learning and action research study

Susan Duke Completed   2019


There is robust evidence about the support needs of carers providing end of life care and how this can be provided. However, a recent national survey of carers found that only half received the support they needed. Appropriate support was less likely to be provided in hospital.

This study aims to develop a service model for the provision of support to carers providing end of life care. Using participatory learning and action methodology it will embed carer support into the practice of ten hospital end of life care teams, guided by Normative Process Theory, a sociological theory of implementation.

The research team will co-produce the service model from the knowledge gained from the implementation phases of the project. The service model will consist of: 1) a detailed description of an evidence based carer intervention, tailored for carers supporting a person being transferred from hospital to their preferred place for end of life care. 2) a detailed description and analysis of the ways in which the intervention is accessed and utilised by clinicians and carers, including: i) a full portrayal of the factors that promote and inhibit effective implementation of the intervention, ii) toolkits to enable effective transfer of the intervention between settings.