Developing Internet Interventions to Improve Psychosocial Outcomes in Breast Cancer Survivors : Attitudes and practices in Portuguese cancer settings

Abstract: Background: Despite the psychosocial treatment gap in cancer settings and the significant body of evidence on the efficacy and cost-effectiveness of internet interventions, research targeting Breast Cancer Survivors (BCS) is scant, and implementation in clinical settings is limited. While the reasons for this research and implementation gaps are multifactorial, including funding, technical and organizational barriers, the attitudes of the distinct stakeholders in the internet interventions’ ecosystem have been posited to play an important role in this regard. Yet, little is known about the attitudes and practices of key stakeholders such as BCS and Mental Health Professionals (MHP) to-ward these interventions or how they should be effectively designed to be widely accepted and easily implemented.  Internet interventions’ development is often viewed as a “black box”. Important behaviour change processes and technological architecture design decisions are seldom reported, and development often neglects end-users’ perspectives or the contexts in which internet interventions will be deployed.  This lack of human-centeredness in the development process partly explains high attrition rates and poor engagement, as well as the failed implementation of internet interventions targeting cancer survivors. Hence, there is a need for methodologically sound internet interventions development research within psychosocial oncology, that is centred on the perspectives and practices of the several actors playing in the cancer setting.  Objectives: The current thesis attempts to answer this call and bring the perspectives of key stakeholders into the centre of survivorship internet interventions’ development.  Its overarching aim was to develop iNNOV Breast Cancer (iNNOVBC) – an internet intervention aiming at improving psychosocial outcomes in BCS - using a User-centred design approach, thereby anchoring development on the perspectives and practices of BCS and MHP. Its specific aims were i) to gather requirements for the development of iNNOVBC; ii) to prototype iNNOVBC; and iii) to evaluate iNNOVBC’s usefulness, usability, and feasibility.  Methods: To this end quantitative (i.e., surveys and task analysis usability tests) and qualitative methods (i.e., in-depth and debriefing semi-structured interviews, think-aloud lab-based usability tests and short-term field trials) were combined and four empirical studies were conducted. First, we assessed the attitudes of Portuguese Psychologists toward internet interventions and the potential barriers impacting its implementation (n= 1077; c.f., Study I). Second, we explored in-depth the perspectives and practices of MHP regarding Digital Mental Health (DMH), with a focus on internet interventions (n=13; c.f., Study II). Third, we characterized the attitudes of Portuguese BCS toward DMH and investigated the potential factors associated with such attitudes (n=336; c.f., Study III).   Fourth, we documented the development of iNNOVBC and evaluated its usefulness, usability, and preliminary feasibility (n=24; c.f., Study IV).  Main findings: Despite Portuguese BCS’ and MHP’s limited knowledge, experience, and guarded stance toward internet interventions, iNNOVBC was considered highly useful by these end-users, configuring a promising point-of-need solution to bridge the psychosocial supportive care gap experienced by BCS across survivorship. However, to fulfil its full supportive role and reach high levels of usability and feasibility, iNNOVBC requires further refinement. Alterations are necessary regarding the aesthetics, information architecture, cognitive load, interaction design, and the technological media for intervention delivery (e.g., mobile app version). In addition, iNNOVBC might require further tailoring and a more flexible implementation approach, so that it better adapts to the needs and contexts of its target users. These aspects need to be assessed in future pilot and Randomized Controlled Trial studies.   Implications: The development of internet interventions targeting BCS should, when-ever possible involve its target end-users so that interventions reflect their real needs and are more easily accepted and implemented. Furthermore, development teams should devise comprehensive plans for the translation of interventions to clinical practice, including appropriate training and communication plans, capable of overcoming potential knowledge, training, and attitudinal barriers to successful implementation.