A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology
Background: eHealth programs could be a flexible and scalable resource to support and empower people with advanced cancer and their family caregivers. A face-to-face intervention that has demonstrated effectiveness is the “FOCUS” program, developed and tested in the USA. Recently the FOCUS program w...
| Main Authors: | , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2023-09-01
|
| Series: | Internet Interventions |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2214782923000593 |
| _version_ | 1828716779509121024 |
|---|---|
| author | Vincent Van Goethem Sigrid Dierickx Orphé Matthys Laurel Northouse Line Lund Catherine Jordan Elena Turola Maaike van der Wel David Scott Richard Harding Luc Deliens Lore Lapeire Peter Hudson Aline De Vleminck Joachim Cohen |
| author_facet | Vincent Van Goethem Sigrid Dierickx Orphé Matthys Laurel Northouse Line Lund Catherine Jordan Elena Turola Maaike van der Wel David Scott Richard Harding Luc Deliens Lore Lapeire Peter Hudson Aline De Vleminck Joachim Cohen |
| author_sort | Vincent Van Goethem |
| collection | DOAJ |
| description | Background: eHealth programs could be a flexible and scalable resource to support and empower people with advanced cancer and their family caregivers. A face-to-face intervention that has demonstrated effectiveness is the “FOCUS” program, developed and tested in the USA. Recently the FOCUS program was translated and adapted to the European context as part of an international study in six European countries, resulting in the “FOCUS+” program. FOCUS+ served as the basis for development of the web-based iFOCUS program. Objective: We aim to (1) describe the development process of the iFOCUS program, (2) outline the challenges we encountered and how they were overcome, and (3) present findings regarding the acceptability and usability of iFOCUS. Methods: We used the four phased agile Scrum methodology to develop iFOCUS and applied set timeframes of rapid program development and evaluation (sprints). Five teams were involved in the development i.e. a core development group, a web development team, an international consortium, audio-visual experts, and potential end-users. Results: Development followed seven steps, integrated across the four phases of Scrum: (1) concept design, (2) development of mock-ups, (3) Feedback from the international consortium, (4) technical development of iFOCUS, (5) creating versions for the six participating countries, (6) preliminary testing of iFOCUS and (7) implementing the final version in a randomized controlled trial. User testing included 42 participants (twenty patient-family caregiver dyads and two bereaved family caregivers) who reviewed the iFOCUS program. Users found the iFOCUS program to be acceptable and usable. Feedback mainly focused on text size and fonts. Minor changes to the content, tailoring, and program flow were required. During development we encountered program specific and general challenges. Using the Scrum methodology facilitated iterative development to address these issues. For some challenges, such as tailoring, we had to make pragmatic choices due to time and resource limitations. Conclusions/discussion: The development of a tailored, self-managed psychoeducational eHealth program for people with advanced cancer and their family caregivers is an intense process and requires pragmatic choices. By keeping the emphasis on the target population during development, no specific remarks pertaining to advanced cancer were identified. Some challenges we encountered are common to eHealth development, others were related to program specific requirements. Using the Scrum methodology allows teams to efficiently collaborate during program development and increases the flexibility of the development process. Interpersonal contact between research staff and potential end-users is recommended during and after the development of eHealth programs. |
| first_indexed | 2024-03-12T14:18:17Z |
| format | Article |
| id | doaj.art-4f19c734aa364eecbc8636a17cbac2a8 |
| institution | Directory Open Access Journal |
| issn | 2214-7829 |
| language | English |
| last_indexed | 2024-03-12T14:18:17Z |
| publishDate | 2023-09-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Internet Interventions |
| spelling | doaj.art-4f19c734aa364eecbc8636a17cbac2a82023-08-20T04:38:02ZengElsevierInternet Interventions2214-78292023-09-0133100659A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodologyVincent Van Goethem0Sigrid Dierickx1Orphé Matthys2Laurel Northouse3Line Lund4Catherine Jordan5Elena Turola6Maaike van der Wel7David Scott8Richard Harding9Luc Deliens10Lore Lapeire11Peter Hudson12Aline De Vleminck13Joachim Cohen14Vrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Ghent University, Department of Public Health and Primary Care, C. Heymanslaan 10, 9000 Ghent, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, Belgium; Corresponding author at: End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Corneel Heymanslaan 10, 9000 Ghent, Belgium.Vrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Ghent University, Department of Public Health and Primary Care, C. Heymanslaan 10, 9000 Ghent, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, BelgiumVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Ghent University, Department of Public Health and Primary Care, C. Heymanslaan 10, 9000 Ghent, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, BelgiumUniversity of Michigan School of Nursing, Ann Arbor, MI, USADepartment of Public Health, University of Copenhagen, Copenhagen, Denmark; Palliative Care Research Unit, Bispebjerg and Frederiksberg Hospital, Copenhagen, DenmarkUniversity College Dublin, National University of Ireland, Dublin, IrelandScientific Directorate, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, ItalyErasmus MC, University Medical Center Rotterdam, the NetherlandsThe School of Nursing and Midwifery, Queen's University of Belfast, Belfast, United KingdomCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, United KingdomVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Ghent University, Department of Public Health and Primary Care, C. Heymanslaan 10, 9000 Ghent, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, BelgiumVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Ghent University Hospital, Department of Medical Oncology, C. Heymanslaan 10, 9000 Ghent, BelgiumVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; St Vincent's Hospital and the Univeristy of Melbourne, Centre of Palliative Care, Melbourne, AustraliaVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, BelgiumVrije Universiteit Brussel (VUB) & Ghent University, End-of-life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium; Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Laarbeeklaan 103, 1090 Brussels, BelgiumBackground: eHealth programs could be a flexible and scalable resource to support and empower people with advanced cancer and their family caregivers. A face-to-face intervention that has demonstrated effectiveness is the “FOCUS” program, developed and tested in the USA. Recently the FOCUS program was translated and adapted to the European context as part of an international study in six European countries, resulting in the “FOCUS+” program. FOCUS+ served as the basis for development of the web-based iFOCUS program. Objective: We aim to (1) describe the development process of the iFOCUS program, (2) outline the challenges we encountered and how they were overcome, and (3) present findings regarding the acceptability and usability of iFOCUS. Methods: We used the four phased agile Scrum methodology to develop iFOCUS and applied set timeframes of rapid program development and evaluation (sprints). Five teams were involved in the development i.e. a core development group, a web development team, an international consortium, audio-visual experts, and potential end-users. Results: Development followed seven steps, integrated across the four phases of Scrum: (1) concept design, (2) development of mock-ups, (3) Feedback from the international consortium, (4) technical development of iFOCUS, (5) creating versions for the six participating countries, (6) preliminary testing of iFOCUS and (7) implementing the final version in a randomized controlled trial. User testing included 42 participants (twenty patient-family caregiver dyads and two bereaved family caregivers) who reviewed the iFOCUS program. Users found the iFOCUS program to be acceptable and usable. Feedback mainly focused on text size and fonts. Minor changes to the content, tailoring, and program flow were required. During development we encountered program specific and general challenges. Using the Scrum methodology facilitated iterative development to address these issues. For some challenges, such as tailoring, we had to make pragmatic choices due to time and resource limitations. Conclusions/discussion: The development of a tailored, self-managed psychoeducational eHealth program for people with advanced cancer and their family caregivers is an intense process and requires pragmatic choices. By keeping the emphasis on the target population during development, no specific remarks pertaining to advanced cancer were identified. Some challenges we encountered are common to eHealth development, others were related to program specific requirements. Using the Scrum methodology allows teams to efficiently collaborate during program development and increases the flexibility of the development process. Interpersonal contact between research staff and potential end-users is recommended during and after the development of eHealth programs.http://www.sciencedirect.com/science/article/pii/S2214782923000593eHealthDyadicAdvanced cancerFamily caregiverIntervention developmentPsychoeducational intervention |
| spellingShingle | Vincent Van Goethem Sigrid Dierickx Orphé Matthys Laurel Northouse Line Lund Catherine Jordan Elena Turola Maaike van der Wel David Scott Richard Harding Luc Deliens Lore Lapeire Peter Hudson Aline De Vleminck Joachim Cohen A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology Internet Interventions eHealth Dyadic Advanced cancer Family caregiver Intervention development Psychoeducational intervention |
| title | A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology |
| title_full | A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology |
| title_fullStr | A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology |
| title_full_unstemmed | A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology |
| title_short | A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology |
| title_sort | self management psychoeducational ehealth program to support and empower people with advanced cancer and their family caregivers development using the scrum methodology |
| topic | eHealth Dyadic Advanced cancer Family caregiver Intervention development Psychoeducational intervention |
| url | http://www.sciencedirect.com/science/article/pii/S2214782923000593 |
| work_keys_str_mv | AT vincentvangoethem aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT sigriddierickx aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT orphematthys aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT laurelnorthouse aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT linelund aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT catherinejordan aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT elenaturola aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT maaikevanderwel aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT davidscott aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT richardharding aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT lucdeliens aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT lorelapeire aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT peterhudson aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT alinedevleminck aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT joachimcohen aselfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT vincentvangoethem selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT sigriddierickx selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT orphematthys selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT laurelnorthouse selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT linelund selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT catherinejordan selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT elenaturola selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT maaikevanderwel selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT davidscott selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT richardharding selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT lucdeliens selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT lorelapeire selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT peterhudson selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT alinedevleminck selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology AT joachimcohen selfmanagementpsychoeducationalehealthprogramtosupportandempowerpeoplewithadvancedcancerandtheirfamilycaregiversdevelopmentusingthescrummethodology |