Usefulness of a Digitally Assisted Person-Centered Care Intervention: Qualitative Study of Patients’ and Nurses’ Experiences in a Long-term Perspective

Abstract

Background Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. Objective We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. Methods This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). Results The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. Conclusions The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention’s improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully.

Are all cancer survivors included when using electronically administered patient reported outcomes in primary healthcare cancer rehabilitation? A cross-sectional study

“…In palliative care, gatekeeping, where healthcare professionals shield their patients from entering studies or using PROs because of a notion that it will be too burdensome for the patient to participate due to, e.g., disease burden or cognitive impairment, is a known concern [ 45 , 46 ]. Similarly, in a study implementing a digital version of the guided self-determination tool, the healthcare professionals had concerns on the patients’ behalf about age, digital skills, and cognitive function [ 47 ].…”

Face and content validity of the EMPOWER-UP questionnaire: a generic measure of empowerment in relational decision-making and problem-solving

“…Although the questionnaire's conceptual framework was originally developed in the context of diabetes [23], the theoretical framework has been recognized in various other contexts. The wide dissemination of an empowerment-based intervention based on the same framework [48][49][50][51] suggests that more similarities than differences exist between users with various LTHCs in terms of their sparse experiences of realized empowerment and strengthens the argument that a questionnaire built on these patterns is applicable across healthcare. In future attempts to close the gap between the aim of empowerment and its realization in practice, clinicians and researchers must be able to compare and contrast promising interventions, providing decision-makers knowledge about which interventions are most useful for whom and where.…”