Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

Abstract

Background: Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR). Methods: A descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed. Results: Two main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights'consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR. Conclusions: In order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be

Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

“…The ability to access patient health information was consistently identified as facilitating care partner portal use (8 of 12 articles), 22 , 26 , 42 , 44 , 45 , 59 , 60 , 61 with the remaining 4 articles 49 , 50 , 52 , 62 emphasizing importance without specifying directionality and identifying care coordination (eg, messaging, appointment scheduling, and filling prescriptions) as facilitating care partner portal use (8 articles). 30 , 40 , 42 , 45 , 50 , 52 , 59 , 61 …”

Patient Portal Barriers and Group Differences: Cross-Sectional National Survey Study

“…Future studies should test whether modifications to patient portals, such as larger font size, increased contrast between the text and background, and voice-enabled applications, could increase comfort with patient portals among older frail adults. Some health care systems have also allowed patients to designate a caregiver to access the patient portal on their behalf, although uptake has been slow [ 73 - 75 ]. Implementation strategies that incorporate patient caregivers, such as proxy portal access, training for caregivers on the patient portal, and allowing patients to choose which information is shared with the caregiver, could help make the portal more accessible to patients who lack comfort with technology.…”

Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

“…To enhance the chances of developing a truer set of outcome domains for improved COS uptake, future assessments should adopt a more thorough typology to assess the degree to which deficits in caregivers' needs are present and to develop transparent conceptual frameworks that include key definitions and that are built on a hybrid model using good quality caregiver frameworks alongside qualitative feedback from large and culturally diverse international cohorts of caregivers. 53 With increased emphasis on e-healthcare, it seems both desirable and practical to conceptualise an accessible and solution-based model of future e-assessment that can address recognised healthcare challenges, including limited clinic time, poor caregiver identification and healthcare communication, [53][54][55][56][57][58] allowing for timely identification and/or triage of unmet psychosocial needs by practitioners while strengthening a caregiver's sense of autonomy, coping ability and resilience. 59 60 To inform the development of solution-focused assessment e-tools, it is important that research is also conducted into which supports are rated as most important by informal dermatological caregivers.…”