MORECare Capacity: Our research

Aim

The MORECare Capacity project aims to identify, appraise and synthesise ‘best practice’ methods to determine how best to include individuals near to death with limited, fluctuating, diminishing or lack of capacity in research on end-of-life care (EoLC). The project is funded by Marie Curie Cancer Care for nineteen months and jointly led by Dr Catherine Evans (KCL) and Professor Irene Higginson (KCL).

Overall design

The project uses methods of literature scoping, literature review, an email survey to leading national and international researchers to capture grey literature, a consultation with stakeholders and ‘think-tank’ workshops with user groups and experts. The literature scoping informs areas considered in the review and consultation. We have partly completed the literature scoping of studies on capacity and consent in palliative and end of life care. We are now undertaking the systematic literature review supplementing this with the survey to capture ‘out of view’ data. The next stage will comprise a face-to-face consultation with stakeholders on solutions emerging from the survey and review, followed by a web-based consultation. The research findings will form the initial methods guidance on processes of consent for adults lacking capacity.

Synthesis of the findings will be presented at an expert ‘think tank’ workshop to discuss areas of contention, uncertainty and issues of particular significance. The final synthesis will provide guidance, in a similar format to that of the 2008 MRC Guidance Developing and Evaluating Complex Interventions