Authors:

Abstract

Introduction: In research, there is a growing focus on user involvement in all stages of the research project. Geriatric patients are characterized by high age, multimorbidity, and frequently in combination with functional impairments. Involving such vulnerable and complex older patients can be difficult and call for reflection on their physical-, cognitive-, and social health as well as ethical considerations. The project “In the footstep of the old vulnerable patient” is a field observation study on the patient's transition from home to hospital and vice versa.

Aim, theory, and methods: This study aimed to see how user involvement could be developed for vulnerable older patients and stakeholders.

Sensitivity and ethical reflections in the research team were emphasized as a prerequisite when endowing vulnerable participants to be involved in research. A research-user-committee with patients and their relatives is under creation, but a reflection on how to establish and maintain this needs more ethical consideration. A pragmatic choice was made to ensure the involvement of patients in this study. Thus, individual conversations were conducted with five hospitalized patients admitted to the Department of Geriatric Medicine. The project, aim, method, and what the student expected to explore or to be particularly observant around was discussed with the patients, and they were encouraged to respond to all processes of the project.

Further, the project will be developed in co-creation with an advisory board including healthcare professionals, researchers, patients, and relatives.

Results: All participants found the project relevant and acknowledged they would like to give input to the study. They talked about being alone in the transition between hospital and home, but also about being dependent on their relatives. As they often experienced being a burden to their children, they recommended involving the relatives in the planned observational study.  All participants expressed the importance of being seen as a person, despite their functional limitations and need for help. In this regard, they also described the interaction with primary healthcare as important both when being ill and in need of help. 

Conclusion: Participants' own stories put focus on important topics in the protocol and the future development and execution of the study. To involve old vulnerable participants in the research process the researcher must be aware of how to create a safe environment and meaningful engagement with ethical considerations for each participant.

Implication: User involvement in vulnerable old participants must be pragmatic and creative, and take the person's vulnerability into considerations.  Involving older participants must be ethical and sensitive and take the person's capability and energy into consideration.