Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR) Part 2

Abstract

Previously, we described the development of the first part of the framework of Patient and Informal Caregiver Participation in Research (PAICPAIR part 1) and how it was implemented in the empirical study Dying With Dignity. Currently, we present our choices and experiences gained in PAICPAIR part 2, highlighting how PAICPAIR guided us as a modifiable and adaptable framework, with a particular emphasis on identifying and meeting the individual needs of our vulnerable coresearchers. This framework can be used as a methodological approach and study design in future research and inspire researchers to include patients receiving palliative care and informal caregivers-as coresearchers.