Members of the Marie Curie (MC) Expert Voices Group (EVG) have all cared for someone at the end of life. Research EVG (REVG) members use this experience to contribute to research. To improve Patient and Public Involvement (PPI) in end-of-life research they have used motivation theory to review case studies of their research contributions.
To improve the quality of PPI in end-of-life care (EOLC) research, through consideration of motivation, using REVG case studies.
- Review case studies of REVG involvement in EOLC research.
- Note factors contributing to participant sense of efficacy.
- Explore alignment with participant-professed reasons for contributing to research.
- Consider the factors suggested to maintain ‘motivational flow’.
- Thus draw together key factors promoting successful PPI.
Case studies of REVG involvement at all stages of research cycles included:
- reviewing research submissions e.g. research centre quinquennial review (QQR);
- questionnaire design and wording e.g. Delphi study on advance care planning;
- consensus days, e.g. bereavement consensus days;
- dissemination, e.g. presentations to government, brain tumour information sheet;
- impact, e.g. use of case studies for review publications.
Factors found to contribute to participants' sense of efficacy in these examples included:
- targeted informative invitations;
- clear, jargon-free instructions;
- good facilitation that draws out participant experiences.
Ensuring alignment with participant’s reasons for action included:
- opportunities to use all expertise;
- understanding the range of participant goals and planning to allow them to be met.
PPI in EOLC research can be improved if participant motivation factors, such as: reasons for actions, agency, goals, balance between challenge and skills, and feedback, are understood and planned for.
Patient or healthcare consumer involvement:
Marie Curie Research Expert Voices who have all cared for someone at the end of life have used their experience and motivation theory models, to review case studies of their contributions to research, in order to offer suggestions about how this PPI could be improved.