Conceptualizing patient empowerment in cancer follow-up by combining theory and qualitative data

Abstract

We conceptualized PE based on Zimmerman's theory and empirical data to contextualize the concept in cancer follow-up. When developing a patient reported outcome measure measuring PE for this group of patients, one needs to be attentive to differences in wishes regarding mastery.

For research rooted in the everyday reality of patient experience

“…The higher level of engagement expected of patients as well as innovations in telemedicine and online communication now lead us to view the roles of professionals differently and to train them to support patients so the latter can learn to share their experiences and their experiential knowledge, make the decisions that affect them, and exercise leadership with regard to their health [1,9,13]. However, the literature tells us little about the ways in which professionals can actually support patient partners in their bid for autonomy, nor does it help clearly define the outlines of the approach from the perspective of patient partners and of their family caregivers (also defined as partners) [14]. In this regard, academic settings and researchers increasingly rely on the new role of patients as partners in research to further develop knowledge in the field.…”

“…In this regard, academic settings and researchers increasingly rely on the new role of patients as partners in research to further develop knowledge in the field. As experts in living with disease and of the organization of care, patients as partners in research are viewed as the ones who can best communicate theirs and their loved ones' reality, interests, and needs [14,15,16].…”

“…communication with patients, their recruitment, the collection and analysis of data as well as the dissemination of findings to the patient partners, the public, health care professionals, and researchers [3,14,18].…”

The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow‐up

“…From the beginning of the study, the qualitative interviews were considered both as a data‐collection tool, enabling the research team to explore the overall research questions of the Empowerment study and form the basis for the development of a PROM questionnaire and as an exercise to explore the impact of peer interviewing. Both interviewees and peer interviewers had given their informed consent, considering their respective roles in the study of patient empowerment and peer interviewing.…”

“…This paper explores the impact of involving patient representatives as peer interviewers in a Danish research project on patient empowerment amongst people in cancer follow‐up (from now on “the Empowerment study”). The Empowerment study is a three‐year (2015‐2017) mixed‐method project, which has explored the multiple aspects of patient empowerment amongst Danes in cancer follow‐up, using semi‐structured interviews and questionnaires. The study draws on Zimmerman's and Rappaport's understandings of empowerment as a process by which patients develop knowledge, skills and motivation to take control of their own situation and the state in which they have a sense of being in control or having mastery.…”