Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany.
Caregivers
Gastrointestinal neoplasms
Patient participation
Patient portals
Qualitative research
Journal
BMC medical informatics and decision making
ISSN: 1472-6947
Titre abrégé: BMC Med Inform Decis Mak
Pays: England
ID NLM: 101088682
Informations de publication
Date de publication:
13 07 2020
13 07 2020
Historique:
received:
30
10
2019
accepted:
29
06
2020
entrez:
15
7
2020
pubmed:
15
7
2020
medline:
5
1
2021
Statut:
epublish
Résumé
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). 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. 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. 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. ISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).
Sections du résumé
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).
Identifiants
pubmed: 32660600
doi: 10.1186/s12911-020-01172-4
pii: 10.1186/s12911-020-01172-4
pmc: PMC7358207
doi:
Banques de données
ISRCTN
['ISRCTN85224823']
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
158Subventions
Organisme : Bundesministerium für Bildung und Forschung
ID : 01KQ1003B
Pays : International
Références
Support Care Cancer. 2019 Aug;27(8):2771-2781
pubmed: 30519734
J Med Internet Res. 2015 May 21;17(5):e121
pubmed: 25998006
Qual Health Res. 2017 Jul;27(8):1146-1159
pubmed: 27179018
Palliat Support Care. 2013 Jun;11(3):231-52
pubmed: 23046977
Res Social Adm Pharm. 2018 May;14(5):418-426
pubmed: 28528023
Support Care Cancer. 2015 Sep;23(9):2613-21
pubmed: 25652149
BMC Palliat Care. 2018 Feb 17;17(1):29
pubmed: 29454337
BMC Med Inform Decis Mak. 2019 Jul 11;19(1):129
pubmed: 31296210
CA Cancer J Clin. 2014 Nov-Dec;64(6):377-88
pubmed: 25200391
Ann Intern Med. 2013 Nov 19;159(10):677-87
pubmed: 24247673
BMC Med Inform Decis Mak. 2018 Nov 20;18(1):105
pubmed: 30458840
J Am Med Inform Assoc. 2018 Dec 1;25(12):1593-1599
pubmed: 30247699
Acta Oncol. 2017 Feb;56(2):139-145
pubmed: 27937437
PLoS One. 2019 Mar 13;14(3):e0212967
pubmed: 30865681
JMIR Hum Factors. 2016 Oct 18;3(2):e25
pubmed: 27756716
Stud Health Technol Inform. 2016;228:157-61
pubmed: 27577362
Palliat Med. 2016 Mar;30(3):270-8
pubmed: 26281854
Health Serv Res. 2011 Jun;46(3):920-38
pubmed: 21275986
JMIR Form Res. 2018 Aug 03;2(2):e10411
pubmed: 30684411
Z Evid Fortbild Qual Gesundhwes. 2017 May;122:9-21
pubmed: 28499764
Ann Oncol. 2011 Dec;22(12):2667-2674
pubmed: 21427061
Int J Clin Pharm. 2016 Jun;38(3):641-6
pubmed: 26666909
Patient Educ Couns. 2017 Dec;100(12):2172-2181
pubmed: 28838630
Psychiatr Prax. 2009 Apr;36(3):115-8
pubmed: 18924061
Ann Intern Med. 2011 Dec 20;155(12):805-10
pubmed: 22184687
J Med Internet Res. 2018 Nov 02;20(11):e10524
pubmed: 30389654
Fam Pract. 2015 Dec;32(6):686-93
pubmed: 26311705
Psychooncology. 2017 Jun;26(6):770-778
pubmed: 27437905
BMC Cancer. 2014 Jul 28;14:541
pubmed: 25069703
Int J Qual Health Care. 2007 Dec;19(6):349-57
pubmed: 17872937
J Aging Health. 2008 Aug;20(5):483-503
pubmed: 18420838
Br J Dermatol. 2015 Jun;172(6):1581-1592
pubmed: 25546238
J Med Internet Res. 2020 Jan 29;22(1):e15102
pubmed: 32012060
JMIR Res Protoc. 2017 Mar 02;6(3):e33
pubmed: 28254735
Cancer. 2016 Jul 1;122(13):1987-95
pubmed: 26991807