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

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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 enhanced.

Trial registration

ISRCTN85224823. Date of registration: 23/12/2015 (retrospectively registered).

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Most cited references 29

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Ensuring rigour and trustworthiness of qualitative research in clinical pharmacy.

Muhammad Hadi, S José Closs (2016)

The use of qualitative research methodology is well established for data generation within healthcare research generally and clinical pharmacy research specifically. In the past, qualitative research methodology has been criticized for lacking rigour, transparency, justification of data collection and analysis methods being used, and hence the integrity of findings. Demonstrating rigour in qualitative studies is essential so that the research findings have the "integrity" to make an impact on practice, policy or both. Unlike other healthcare disciplines, the issue of "quality" of qualitative research has not been discussed much in the clinical pharmacy discipline. The aim of this paper is to highlight the importance of rigour in qualitative research, present different philosophical standpoints on the issue of quality in qualitative research and to discuss briefly strategies to ensure rigour in qualitative research. Finally, a mini review of recent research is presented to illustrate the strategies reported by clinical pharmacy researchers to ensure rigour in their qualitative research studies.

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Patient interest in sharing personal health record information: a web-based survey.

Donna Zulman, Kim Nazi, Carolyn L Turvey … (2011)

Electronic personal health record (PHR) systems are proliferating but largely have not realized their potential for enhancing communication among patients and their network of care providers. To explore preferences about sharing electronic health information among users of the U.S. Department of Veterans Affairs (VA) PHR system, My HealtheVet. Web-based survey of a convenience sample. My HealtheVet Web site from 7 July through 4 October 2010. 18 471 users of My HealtheVet. Interest in shared PHR access and preferences about who would receive access, the information that would be shared, and the activities that users would delegate. Survey respondents were predominantly men (92%) and aged 50 to 64 years (51%) or 65 years or older (39%); approximately 39% reported poor or fair health status. Almost 4 of 5 respondents (79%) were interested in sharing access to their PHR with someone outside of their health system (62% with a spouse or partner, 23% with a child, 15% with another family member, and 25% with a non-VA health care provider). Among those who selected a family member other than a spouse or partner, 47% lived apart from the specified person. Preferences about degree of access varied on the basis of the type of information being shared, the type of activity being performed, and the respondent's relationship with the selected person. The survey completion rate was 40.8%. Results might not be generalizable to all My HealtheVet users. In a large survey of PHR users in the VA system, most respondents were interested in sharing access to their electronic health information with caregivers and non-VA providers. Existing and evolving PHR systems should explore secure mechanisms for shared PHR access to improve information exchange among patients and the multiple persons involved in their health care. Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.

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Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey

Line Lund, Lone Ross, Morten Petersen … (2014)

Background Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences. Methods In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers. Results A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found. Conclusions Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted. Electronic supplementary material The online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Aline Weis:

ORCID: http://orcid.org/0000-0001-7899-1789

Aline.Weis@med.uni-heidelberg.de

Sabrina Pohlmann: pohlmann-sabrina@gmx.net

Regina Poss-Doering: Regina.Poss-Doering@med.uni-heidelberg.de

Beate Strauss: beate-strauss@gmx.de

Charlotte Ullrich: Charlotte.Ullrich@med.uni-heidelberg.de

Helene Hofmann: Lene.h@gmx.net

Dominik Ose: dominik.ose@hsc.utah.edu

Eva C. Winkler: Eva.Winkler@med.uni-heidelberg.de

Joachim Szecsenyi: Joachim.Szecsenyi@med.uni-heidelberg.de

Michel Wensing: Michel.Wensing@med.uni-heidelberg.de

Journal

Journal ID (nlm-ta): BMC Med Inform Decis Mak

Journal ID (iso-abbrev): BMC Med Inform Decis Mak

Title: BMC Medical Informatics and Decision Making

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6947

Publication date (Electronic): 13 July 2020

Publication date PMC-release: 13 July 2020

Publication date Collection: 2020

Volume: 20

Electronic Location Identifier: 158

Affiliations

[1 ]GRID grid.5253.1, ISNI 0000 0001 0328 4908, Department of General Practice and Health Services Research, , University Hospital Heidelberg, ; Im Neuenheimer Feld 130.3, 69120 Heidelberg, Germany

[2 ]GRID grid.5253.1, ISNI 0000 0001 0328 4908, Ethics and Patient-Oriented Care, National Center for Tumor Diseases (NCT), , Im Neuenheimer Feld 460, ; 69120 Heidelberg, Germany

[3 ]GRID grid.223827.e, ISNI 0000 0001 2193 0096, Department of Family and Preventive Medicine, , University of Utah, ; 375 Chipeta Way, Salt Lake City, UT 84108 USA

Author information

Aline Weis http://orcid.org/0000-0001-7899-1789

Article

Publisher ID: 1172

DOI: 10.1186/s12911-020-01172-4

PMC ID: 7358207

PubMed ID: 32660600

SO-VID: 08a982c0-d334-40a1-8ead-e672ee8c19ed

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 30 October 2019

Date accepted : 29 June 2020

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100002347, Bundesministerium für Bildung und Forschung;

Award ID: 01KQ1003B

Funded by: Deutsche Forschungsgemeinschaft

Award ID: Open Access Publishing, by the Baden-Württemberg Ministry of Science, Research and the Arts and by Ruprecht-Karls-Universität Heidelberg

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ScienceOpen disciplines: Bioinformatics & Computational biology

Keywords: patient portals,caregivers,qualitative research,patient participation,gastrointestinal neoplasms

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ScienceOpen disciplines: Bioinformatics & Computational biology

Keywords: patient portals, caregivers, qualitative research, patient participation, gastrointestinal neoplasms

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

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Abstract

Background

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Trial registration

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Most cited references 29

Ensuring rigour and trustworthiness of qualitative research in clinical pharmacy.

Patient interest in sharing personal health record information: a web-based survey.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey

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