The patient perspective: investigating patient empowerment enablers and barriers within the oncological care process.

Luca Bailo,Laura Vergani,Gabriella Pravettoni,Paulo Guiddi,Giulia Marton

doi:10.3332/ecancer.2019.912

Abstract

Patient empowerment is a multi-factorial concept and its relevance has led to a growing body of literature; despite this attention, there is still no agreement regarding the elements that define its expression. While several studies have already investigated the positive effect of empowerment interventions on the care process outcome, the aim of this study is to investigate which factors can foster an empowered management of the cancer condition from the patient’s perspective. To examine patients’ perception of empowerment enablers, we asked for participants’ input on the role of three factors frequently cited as positively affected by empowerment: care quality, perception of direct control and relationships within the care context, during the care process. Three focus groups were conducted with 34 cancer patients. The results highlight the perception of direct control on their treatment as the least valued element (2.87, SD 0.566) when compared with care quality (3.75, SD 0.649) and relational support in the care context (3.91, SD 0.274).Unlike traditional approaches to empowerment, patient’s expression of empowerment does not mainly reside in the direct control of their condition as much as in an active role within the relationship with caretakers, such as the ability to choose the doctor, the care team or the health organisation in charge of their healthcare. Emerging aspects from this analysis of patient’s perspective are central in order to adequately consider empowerment in the care process and to provide more effective care strategies.

Highlights

In the last decades, empowerment has gained importance in health care and its relevance has led to a growing body of literature [1]
Even though the majority of authors agree about the importance of patient empowerment in the healthcare context, there is no unique definition of this construct
Instead of focusing on the effects that empowerment has on the patient’s condition, both from a clinical and psychological perspective, we aim to investigate what patients perceive as empowerment enablers from their perspective

Summary

Introduction

Empowerment has gained importance in health care and its relevance has led to a growing body of literature [1]. A recent review [3] of patient empowerment found 17 different definitions and described ten possible dimensions in which it may be expressed, such as participation in clinical decision-making, patients’ control over their condition and knowledge acquisition These elements showed that empowerment can be framed both as an outcome and as a process: as a process, by considering all those elements that can influence the participation in the different phases of the care process and shift the decisional power towards the patient; as an outcome, by focusing on the results of this development. This means that empowerment may be seen as an enabling process in which healthcare professionals cooperate with patients to help them acquire knowledge and resources; its outcome is a patient with a greater ability to manage his/her condition and to make informed decisions (ibidem)

Objectives

Discussion

Conclusion