End-users perspective is key in the development of Internet interventions for breast cancer survivors

Internet interventions targeting breast cancer survivors must be developed with its end-users in focus, according to a doctoral thesis at Linköping University. The therapy must be in tune with the patient’s needs and must fit within psychologists’ workflows, providing them with the necessary training in internet-based work methods.

A photo of a computer, in the corner an arm taking notes is visible. J Kelly Brito/Unsplash

Anxiety, depression, fear of cancer recurrence, fatigue, sleeping problems and sexual dysfunction – a significant number of breast cancer survivors suffer from conditions like these after having been declared cancer-free.

These psychological conditions are often not identified or treated by the healthcare system. There is a psychosocial treatment gap, according to Cristina Mendes Santos, who recently completed her doctorate in the Phoenix Erasmus Mundus joint doctoral programme on Dynamics of Health and Welfare.

Internet interventions could be used to bridge this gap. There is a great deal of research on internet-based treatments and their effectiveness, but when it comes to treatment specifically for breast cancer survivors, both research and actual use in clinical contexts are limited.

Against this background, Cristina Mendes Santos has studied how the Portuguese internet intervention iNNOV Breast Cancer (iNNOVBC) can be developed further to suit both its end-users and the clinical practice. By way of interviews, questionnaires, and user tests, she has studied the attitudes of Portuguese psychologists and breast cancer survivors towards internet interventions, the obstacles impacting the implementation of this sort of therapy, and how iNNOVBC works today.

More knowledge about internet interventions required

The thesis shows that both patients and psychologists in Portugal require more knowledge about internet interventions for breast cancer survivors.

“The main findings of this research were that internet interventions were poorly known by both Portuguese breast cancer survivors and mental health professionals and that this lack of knowledge was significantly associated with a cautious attitude towards these interventions, potentially preventing their adoption”, says Cristina Mendes Santos.

The importance of a user perspective

In addition to more knowledge, there are organisational and technical challenges that must be addressed, if iNNOVBC is to be successfully implemented, according to Cristina Mendes Santos.

“Other potential obstacles could be that a framework describing how the interventions should be implemented in a real-life context has not been developed, that the technology needs to be better adapted to its end-users, and that psychologists feel a lack of control over the online therapeutic process.”

This indicates the importance of ensuring that the therapy programme is based on the end-users actual needs. It should support psychologists in the clinical process, and psychologists must be given training so that they can feel secure with working online. Similarly, the programme itself must be user friendly, for instance in its interaction design.

To provide support for the patient, the therapy must be adaptable to patients’ evolving care needs and allow flexible use.

“Evidence-based psychosocial interventions are usually highly structured, but this study indicates that patients value treatments that are personalized and that can be used flexibly, better fitting their day-to-day lives. Consequently, further research is needed on the optimisation and simplification of current evidence-based interventions, as well as on how to deliver these interventions in a non-intrusive and meaningful manner. In this regard, human-centered development approaches are key”, says Cristina Mendes Santos.

Now she hopes that her research can be used for the development of other treatments.

“I hope that this research and the several development requirements we identified may be useful in informing the development of other programmes and that they can contribute to bridging the psychosocial treatment gap within oncology.”

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About the thesis and project

The thesis has the title Developing Internet Interventions to Improve Psychosocial Outcomes in Breast Cancer Survivors: Attitudes and practices in Portuguese cancer settings. The project has been funded by The European Union Erasmus+ programme, Fraunhofer Portugal AICOS and the Portuguese Foundation for Science and Technology.

About iNNOVBC

iNNOV Breast Cancer (iNNOVBC) is a programme developed in Portugal to help patients with psychosocial conditions relating to breast cancer. The programme makes use of cognitive behavioural therapy (CBT) and is influenced by Commitment and Acceptance Therapy (ACT). The treatment will be tested in Portugal, for its efficacy and cost-effectiveness during 2022-2023.

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