A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype.
cancer
decision aid
decision support techniques
fertility
internet-based intervention
mobile phone
patient-centered care
psychosocial intervention
user-centered design
web-based intervention
Journal
JMIR formative research
ISSN: 2561-326X
Titre abrégé: JMIR Form Res
Pays: Canada
ID NLM: 101726394
Informations de publication
Date de publication:
22 Jan 2021
22 Jan 2021
Historique:
received:
05
06
2020
accepted:
15
11
2020
revised:
29
10
2020
entrez:
22
1
2021
pubmed:
23
1
2021
medline:
23
1
2021
Statut:
epublish
Résumé
An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations. This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building. User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed. The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process. The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.
Sections du résumé
BACKGROUND
BACKGROUND
An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations.
OBJECTIVE
OBJECTIVE
This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building.
METHODS
METHODS
User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed.
RESULTS
RESULTS
The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process.
CONCLUSIONS
CONCLUSIONS
The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.
Identifiants
pubmed: 33480848
pii: v5i1e20841
doi: 10.2196/20841
pmc: PMC7864768
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e20841Subventions
Organisme : NCI NIH HHS
ID : K07 CA229186
Pays : United States
Informations de copyright
©Catherine Benedict, Katherine L Dauber-Decker, D'Arcy King, Alexandria Hahn, Jennifer S Ford, Michael Diefenbach. Originally published in JMIR Formative Research (http://formative.jmir.org), 22.01.2021.
Références
Psychooncology. 2018 Dec;27(12):2829-2839
pubmed: 30238545
J Adolesc Young Adult Oncol. 2016 Mar;5(1):48-57
pubmed: 26812452
J Natl Compr Canc Netw. 2018 Sep;16(9):1137-1149
pubmed: 30181423
Patient Educ Couns. 2013 Aug;92(2):253-9
pubmed: 23623330
BMJ. 2006 Aug 26;333(7565):417
pubmed: 16908462
BMJ Open. 2020 Feb 10;10(2):e031739
pubmed: 32047010
Breast J. 2011 Jan-Feb;17(1):112-4
pubmed: 21129095
Health Psychol. 2005 Jul;24(4S):S49-56
pubmed: 16045419
BMC Med Inform Decis Mak. 2013;13 Suppl 2:S11
pubmed: 24624995
JMIR Cancer. 2019 Jun 6;5(1):e12593
pubmed: 31199289
BMJ Open. 2019 Dec 29;9(12):e033630
pubmed: 31888941
Health Promot Pract. 2012 Sep;13(5):577-80
pubmed: 22763891
Cancer. 2015 Aug 1;121(15):2529-36
pubmed: 26054052
BMJ Qual Saf. 2018 May;27(5):380-388
pubmed: 29269567
J Med Internet Res. 2019 May 21;21(5):e13117
pubmed: 31115340
J Clin Oncol. 2013 Feb 10;31(5):631-40
pubmed: 23295805
PLoS One. 2020 Jul 22;15(7):e0236180
pubmed: 32697801
Hum Reprod. 2013 Feb;28(2):350-6
pubmed: 23203214
BMC Med Inform Decis Mak. 2013;13 Suppl 2:S13
pubmed: 24625064
Acta Oncol. 2015 Feb;54(2):243-52
pubmed: 25140859
Psychol Bull. 2001 Mar;127(2):267-86
pubmed: 11316014
BMC Health Serv Res. 2019 Feb 6;19(1):101
pubmed: 30728004
J Adolesc Young Adult Oncol. 2018 Feb;7(1):30-36
pubmed: 28759303
Patient Educ Couns. 2015 Apr;98(4):462-8
pubmed: 25577469
Nurs Inq. 2011 Jun;18(2):135-42
pubmed: 21564394
Health Informatics J. 2016 Sep;22(3):633-50
pubmed: 25916831
BMC Med Inform Decis Mak. 2013;13 Suppl 2:S2
pubmed: 24625093
Support Care Cancer. 2020 Oct;28(10):4857-4867
pubmed: 31993754
J Cancer Surviv. 2018 Feb;12(1):101-114
pubmed: 29034438
Support Care Cancer. 2020 Sep 5;:
pubmed: 32889581
J Behav Med. 2016 Dec;39(6):935-946
pubmed: 27515801
Cancer. 2016 Apr 1;122(7):988-99
pubmed: 26849003
Health Commun. 2020 Jul 23;:1-16
pubmed: 32703034
Psychooncology. 2019 Mar;28(3):459-467
pubmed: 30523651
Psychooncology. 2018 Feb;27(2):401-409
pubmed: 28734119
Cancer. 2016 Jul 1;122(13):2101-9
pubmed: 27213483
J Med Internet Res. 2016 Jan 26;18(1):e20
pubmed: 26813512
BMJ Open. 2019 Jul 24;9(7):e030690
pubmed: 31345986
J Med Internet Res. 2017 Dec 12;19(12):e406
pubmed: 29233804
Cochrane Database Syst Rev. 2017 Apr 12;4:CD001431
pubmed: 28402085
J Cancer Surviv. 2012 Jun;6(2):200-9
pubmed: 22179785
Med Care Res Rev. 2013 Aug;70(4):351-79
pubmed: 23169897