A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: development using the scrum methodology

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, DIAdIC team, Peter Hudson, Aline De Vleminck, Joachim Cohen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

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.

Original languageEnglish
Article number100659
Number of pages15
JournalInternet Interventions
Volume33
Early online date11 Aug 2023
DOIs
Publication statusPublished - 01 Sept 2023

Keywords

  • Advanced cancer
  • Psychoeducational intervention
  • Family caregiver
  • eHealth
  • Intervention development
  • Dyadic

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