P22.02.B RELATIVE REPRESENTATIVES IN RESEARCH: HOW TO APPLY PATIENT AND PUBLIC INVOLVEMENT IN THE DEVELOPMENT OF AN INTERVENTION FACILITATING RELATIVE’S INVOLVEMENT IN THE PATIENT’S CARE AND DISEASE TRAJECTORY

Abstract

Abstract BACKGROUND The importance of engaging patients and the public in health research is gaining growing recognition. However, robust evidence of the process seems to be lacking. This study aims to apply Patient and Public Involvement as a panel of relatives from the development to implementation of a clinical tool, to systematically involve relatives of patients with acquired brain injury and a malignant brain tumor in the patient’s care and disease trajectory. MATERIAL AND METHODS This is a descriptive study in the initial phase of applying Patient and Public Involvement in a current research project. Two national patient associations Brain Injury Association and Brain Tumor Association were contacted to recruit relatives of patients within these populations. An informational text with the aim of the overall project and purpose of the research panel was formulated and posted on the home page of- and by the patient associations on behalf of the research group. To enable a broad representation of the whole country, TEAMS was chosen as a communication platform. Preliminary interviews were conducted individually with the relatives and two researchers to align expectations and examine the motivation to participate in the panel. RESULTS Six relatives replied and were considered eligible by the research team, able to express both their own experiences, and representing relatives in general. The relative representatives comprised relatives of patients with acquired brain injury (n=3) and malignant brain tumor (n=3). The relatives were all women between the age of 44 to 66, all partners to the patients, and geographically representing four of the five regions in Denmark. Ethical considerations regarding the relatives were taken into account throughout the process. Two-panel meetings have until now been conducted where the relative representatives have been presented for and discussing findings from two scoping reviews. A pivotal finding is a perceived lack of involvement and systematic support for the children and young adults of the patients. CONCLUSION By including the relatives in the early stage of the research process, they can validate and nuance the research findings by applying their lived experiences and ensuring relevance to a national context. The perspectives and knowledge from the panel are an important foundation before the development of an intervention facilitating the relative’s involvement in the patient’s care and disease trajectory.